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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.”

Mark Esho Launches Youtube Channel

April 25, 2019

Entrepreneur and author Mark Esho has polio. Last year, I was proud to be asked to attend the launch of his book, I Can: I Will.

I am currently reading this book to review, at the author’s personal request.

If Mark Esho’s Youtube Channel, which he has launched today and requested me to publicise, is half as interesting as his book, I personally think you won’t regret following it!

Lazarus- Malawi’s Albino Musician Challenging Myths

April 25, 2019

From the crowded streets of Lilongwe, a busker named Lazarus Chigwandali has risen to challenge the myths and superstitions about people with albinism.

Malawi is home to an estimated 10,000 albinos – a condition that affects the production of the pigment that gives skin, hair and eyes their colour.

But a widely-held belief that their body parts can impart wealth or good luck means people with albinism are frequently abducted, murdered or mutilated in East Africa. Others are raped due to a myth that sex with an albino can cure HIV.

Growing up in Nankumba village, 50 miles south of Malawi’s capital, Lazarus was subjected to violence and marginalisation first-hand.

“People would come and beat me up for no reason,” he tells the BBC. “Even when I was walking around the village, people would just throw stones at me.

“If I went to see a soccer match, people would stop playing and leave the field because they didn’t want to associate with me.”

Life was tough, but solace came through church and music – particularly the songs he wrote and played with his younger brother, Peter, on a makeshift guitar.

“We used to sit down and compose songs about life in the village,” he recalls.

“One of them was about these parents who’d let their kids do whatever they want, like steal and gamble – so we wrote a song to try and let the parents know this was the wrong way. You need to tell your kids not to act like this.

“And all the women in the village, when they go to draw water, they were talking like, ‘These two boys are amazing, they’re singing this song, they’re teaching us how to parent our kids.'”

The brothers suddenly found themselves in the odd position of being embraced by the same people who had once shunned them. They were invited to weddings and christenings, where they would make up songs on the spot about the celebrations.

“People loved it,” he says. But their career came to a tragic end when Peter developed skin cancer, a common but devastating condition for people with albinism.

When Peter died, Lazarus left the village for Lilongwe, where he would busk on the streets for small change. It was not an easy living.

“We used to sleep on rags and we struggled to get enough to eat,” he says. “My wife would tell me, ‘This is not a good family we’re having here.'”

Chance discovery

But he remained upbeat. One of the songs he’d play on the streets was called Stomp on the Devil – a message to Satan that “no matter how miserable you try to make me, I will survive”.

It was this song that caught the eye of an English tourist, who took out her phone and filmed Lazarus performing in a shopping centre.

Her video eventually made its way to Johan Hugo, a Swedish-born, London-based musician who has worked with Lana Del Rey, MIA, Baaba Maal and Mumford & Sons.

“He was playing this kind of punk rock version of traditional music on his banjo, which I really, really liked,” the producer recalls.

“I thought instantly I would love to produce a record for him.”

Hugo called Malawian singer Esau Mwamwaya, with whom he has made several albums under the name The Very Best, and together they set about tracking Lazarus down.

A mutual friend, Spiwe Zulu, happened to have the musician’s number, and together they agreed to record an album – but days before they were due to start, Lazarus went missing.

“We completely lost contact,” Hugo recalls. “And it was Esau’s wife who said, ‘Maybe he’s scared and thinks this is some very elaborate kidnapping attempt.

“We hadn’t even thought of that, being as naïve as we were, but that’s exactly what it was. He’d taken his family and gone to his home village thinking that something was about to go down.”

Once Spiwe managed to reassure the musician that Hugo and Mwamwaya were trustworthy, a makeshift recording studio was set up in an AirB&B complex in Lilongwe, with additional recording taking place in the streets where Lazarus first learned to play.

“We did it right in front of his house,” Hugo recalls. “There were 100 kids and people singing along and clapping and doing the washing and cooking – so it’s like the song gets flavoured by the surrounding area.”

Lazarus says: “For my family, it was one of the biggest moments in our lives. People could not believe how they used to see me walking down the streets and busking, and now there were producers and film-makers recording these songs at my place. It was the most amazing feeling.”

The first single from the sessions was released earlier this year. Called Ndife Alendo (We Are Strangers), it talks about how we are all visitors on Earth, who will one day return home to Heaven. But it is also a metaphor for the plight of people with albinism.

“We are treated as if we are visitors in their own land,” the singer explains. “So I’m telling people, ‘We are human beings, just like you.'”

Ndife Alendo has become a radio hit not just in Malawi, but in the UK – where Jo Whiley and Lauren Laverne have championed Lazarus on BBC Radio 2 and 6 Music.

“Lazarus is a great pop songwriter,” observes Hugo. “His melody, his way of singing, his hooks, it’s all very poppy – but at the same time it’s so traditional and raw and energetic and he combines it all in a way I haven’t really heard before.”

Lazarus says the acclaim for his music has been life-changing.

“Before this, I wanted to jump into the highway and have a car smash me and kill me,” says the 37-year-old.

“But right now, I’m happy that the whole world – and Malawians especially – are listening to what I’m saying in the music.”

Hugo says the musician is in a “unique position” of being able to dismantle cultural stereotypes about albinism.

“And it’s already happening… He’s really becoming a star. He’s done all the TV shows, he’s been invited to the US embassy, there’s going to be a tour.

“So you can see people really rallying behind him, and the cause of people with albinism.”

The message will spread even further when a documentary about Lazarus’s life premieres at the Tribeca Film Festival in New York this weekend.

It has been produced by Madonna, who has championed the musician in his home country, inviting him to share a stage with her at an open-air concert last year.

“I was so surprised that Madonna, who is a popular, well-known person the whole world over, was such a nice person,” he says. “After I met her, it took me some time to get to sleep, because I couldn’t believe it!”

The encounter also opened his eyes to the potential for his music to reach a global audience.

“I would love my songs to become as popular as Madonna’s,” he laughs.

“If that ever happens, I’ll spend a whole day in my house just dancing!”

Former DWP Employee Robert Lyne Claimed ESA Despite Savings

April 25, 2019

A Henleaze man ripped off benefit money from the government department he used to work for.

Robert Lyne was formerly employed by the Department of Work and Pensions, Bristol Crown Court was told.

But he pocketed just under £37,000 in fraudulent payouts by failing to reveal he had nearly £100,000 stashed in the bank.

Lyne, 63, of Wanscow Walk, pleaded guilty to making dishonest representations to obtain benefit, between October 2012 and March last year.

The Recorder of Bristol His Honour Judge Peter Blair QC handed him a 24-week prison sentence, suspended for 18 months.

The judge told him: “You dishonestly obtained social security benefits.

“It should be 36 weeks prison.

“But you are aged 63, you are completely clean of previous convictions and you have an exemplary background of employment.

“You have repaid nearly £37,000 of Employment Support Allowance.”

Lyne was fined £1,000 and told to pay court costs of £360 and a victim surcharge of £115.

Gregory Gordon, prosecuting, said between October 2012 and March 2018 Lyne claimed £36, 915.20 in Employment Support Allowance, declaring he was unable to work and had £350.11 in savings.

Mr Gregory said: “He actually had substantial savings.

“At the start he had £94,988.90.

“The threshold for the claim is £16,000.”

Lyne admitted his guilt in interview and apologised.

He said during the period of the claims he was looking after his father and had suffered family bereavements and mental health issues.

Lyne also produced a letter to the DWP, in which he said had savings, which was not received.

Nicholas Fridd, defending, said: “He is a man of good character.

“His offending simply makes no sense.

“There was no financial motive.

“He repaid all the money.

“He does not appear to have been thinking straight.”

Mr Fridd said his client had previously worked for government departments, including the DWP, and had led an “exemplary” lifestyle.

Without My Wheelchair, I Had More Love Matches

April 25, 2019

Samantha Renke has told 5 Live’s Nihal Arthanayake people with disabilities lose out in ‘disposible society’ of dating apps.

The actress and disability campaigner said when she used dating apps she got more matches when she posted photos without her wheel chair.

DWP Delays UC Backpay

April 24, 2019

Anger is mounting after it was revealed thousands of people who lost out on vital disability payments have still not been reimbursed nine months on.

The Department for Work and Pensions (DWP) was forced to repay 7,000 claimants who lost out on months-worth of severe disability premium payments as a result of being moved to universal credit.

That was nine months ago and so far not one has been compensated.

Officials at the DWP responding to a written question by SNP MP Ronnie Cowan said repayments could take up to six months to administer once MPs have voted on managed migration regulations, which could take place as late as 28 June.

This could mean people might not receive the monies they are entitled to until December 2019 – almost a year and a half after they were promised repayments by the Tory government.

Cowan said: “While the Tory government continue to delay these repayments, each day thousands of the most vulnerable people in society are missing out on the money they need to live and the money they are entitled to.

“The UK government must stop kicking this issue into the long grass and imminently reimburse the thousands of people who have missed out on vital disability payments.

“This is the third back payment scandal the DWP has overseen in two years – it seems the Secretary of State has not learned any lessons and fails to deliver on the promises she has made.”

Joe McDowie from Stirling has been a prominent campaigner against the move to universal credit for disabled people.

He said: “Despite winning this small concession, disabled people are languishing in very difficult circumstances waiting for payouts. You have to realise that disabled people are so much more heavily disadvantaged than regular benefit claimants. That’s why this delay is particularly – some would say deliberately – cruel.”

Following meetings and correspondence with UK ministers, SNP MP Ronnie Cowan is urging the UK government to make the repayments immediately.

Braille Lego Bricks

April 24, 2019

Lego have designed “Braille bricks” to help pupils with sight loss.

The BBC’s Victoria Derbyshire programme has been to meet pupils at one specialist school testing them out.

Some say other communication tools should also be taught.

Greta Thunberg Teaches Us About Autism As Much As Climate Change

April 24, 2019

Greta Thunberg is an impressive individual. Just 16 years old, she has been nominated for the Nobel peace prize after sparking environmental protests around the planet. There is a glorious simplicity to her arguments that makes them hard to refute. What, she asked, was the point of pupils like her learning anything if politicians ignored the glaring facts on climate change? So she sat down outside the Swedish parliament with a hand-painted banner declaring a school strike – and eight months later, is a global icon who has helped to fire up a resurgent green movement.

Thunberg’s parents say their daughter, once painfully introverted, was always a bit different to other children. Four years ago, she was diagnosed with Asperger’s, on the autism spectrum, which helps explain her remorseless focus on the core issue of climate change after overcoming depression. “Being different is a gift,” she told Nick Robinson when interviewed on Radio 4’s Today programme. “It makes me see things from outside the box. I don’t easily fall for lies, I can see through things. If I would’ve been like everyone else, I wouldn’t have started this school strike for instance.”

She admitted her passion was partly down to viewing the world in stark terms. The result of her simplistic approach, fuelled by her condition, is that she has presented this issue with more clarity and competence than almost any adult activist or politician in recent years. And there is something rather beautiful in hearing this teenager demonstrate by her actions how society is stronger when it embraces difference – a message that seems so pertinent to our troubled age. Indeed, this aspect of her stance as a now-public figure on the autism spectrum is arguably as important as her bold stand on climate change, given many prevailing attitudes.

For we live in a society that, far from respecting difference, often seems to fear or ignore those that stand apart from the crowd. Look at how people with autism and learning disabilities are routinely abused, bullied, excluded from school, swept aside in the jobs market and shunted into the worst housing in the toughest parts of town. Hundreds suffer avoidable deaths in the National Health Service each year due to a lack of training for, or indifference of, medical staff, reflecting the insidious discrimination that corrodes our culture. Note how there is almost no debate over the ethics and implications of a dawning new age of eugenics, despite scientific advances that threaten to eliminate conditions such as Down’s Syndrome.

I have spoken to scores of families of girls with autism like Thunberg. Instead of being feted, these teenagers often end up locked in secure psychiatric units where they are forcibly drugged and violently restrained by adults. Some are shut in solitary confinement, even fed through hatches or with food dumped on the floor like dogs. One mother told me of how her daughter also became impassioned over injustice, focusing on human rights issues with a moral clarity and vigour that drove away friends and freaked out their parents. As her anxieties intensified in adolescence there was inadequate support. She ended up in both NHS- and privately run hellholes, learning self-harm from other patients, secluded and frequently restrained.

Autism is not always a gift. But we need to get beyond labels to see individuals, ensuring everyone has a chance to enjoy as meaningful an existence as possible. Celebrate difference, encourage strength, support weaknesses. For many people with this condition, life can be a constant challenge – yet blinkered attitudes and bigotry means their struggles are made worse. Many end up with criminal records after stresses and meltdowns are misinterpreted and then compounded by being misrepresented. Last month one young woman managed to overturn a conviction for malicious damage and a £1,500 fine after she was arrested, strip-searched and charged with obstruction of a rail carriage for the crime of using a toilet, then panicking when a ticket inspector banged on the door.

There will always be some who sneer and pick on differences. We have seen how Frankie Boyle’s cruel jibes at people with learning disabilities proved no bar to his media career. Perhaps inevitably, given their predictable efforts to be provocative, Spiked published an offensive piece by its editor mocking Thunberg as someone who “looks and sounds like a cult member”, attacking her for “the monotone voice. The look of apocalyptic dread in her eyes.” If only such infantile attention-seekers possessed an ounce of her decency, dignity or maturity. Instead they prefer to mock a courageous teenager with autism speaking in a second language, rather than engage with her arguments.

Thunberg is far from alone in offering lessons on harnessing difference for wider societal benefit. It has been claimed some of the great figures from history were autistic, including Charles Darwin, who transformed our understanding of the planet. Then there is Auticon, an Anglo-German company, which uses the cognitive diversity of staff on the spectrum for data and software development. La Casa de Carlota, a design firm in Barcelona, hires staff with Down’s Syndrome, autism and learning disabilities alongside other designers to utilise their unique approach to creativity.

Yet this teenager’s voice is vital at a time when people with autism are being locked up in costly secure hospitals that only worsen their condition simply for the “offence” of being different, while citizens with learning disabilities clog up prisons and remain banished to the fringes of society. She reminds us not only of the urgent need to confront climate change, but also to tackle the intolerant attitudes that still dismiss far too many people for nonconformity and thinking outside the box.

PIP ‘Light Touch’ Awards Cross 350,000

April 24, 2019

With many thanks to Benefits And Work.

More than 375,000 PIP claimants have been given ‘ongoing’ awards of the benefit, meaning that their award is ongoing but will be subject to a ‘light touch’ review after 10 years.

Back in January we published guidance issued to decision makers on how to decide who should be subject to a light PIP touch review.

And in March, we covered Rudd’s announcement that many PIP pensioners would be covered by the light touch guidance.

The latest figures for ongoing awards were revealed in a written answer to MPs by Justin Tomlinson, minister for disabled people, earlier this month. He stated:

“Personal Independence Payment (PIP) is not based on condition or on whether it is or isn’t lifelong, instead being based on the daily living or mobility needs arising. Between April 2013 and 31st January 2019, 375,550 PIP claimants were awarded an ongoing award at their initial decision. Ongoing awards do not have an end date, but will be subject to a light touch review at the 10-year point.

“Ongoing awards have been a feature of PIP since it was introduced in 2013. The change introduced last year provides clearer guidance on the process for Case Managers to follow and will ensure that those receiving the maximum support under PIP, and where their needs will not improve or deteriorate – such as those with a severe or progressive condition – receive an ongoing award with a light touch review at the ten-year point.”

The statement is available from the parliament.uk website.

Stephen Smith’s ESA Backpay Will Now Pay For His Funeral

April 23, 2019

Vital benefit money that six-stone Liverpool man Stephen Smith was wrongly denied will now be used to pay for his funeral.

Yesterday the ECHO revealed that Mr Smith, whose story prompted anger across the country, sadly died just a few of months after winning a lengthy battle with the Department of Work and Pensions (DWP) to access benefits he needed as he battled serious illness.

After being wrongly turned down and told he needed to look for work, an emaciated, six-stone Stephen had to get a pass out of hospital in January in order to fight and overturn the DWP’s decision.

After his case was highlighted by the ECHO, the government eventually agreed to issue backpay of more than £4,000 to Mr Smith for the time he should have been receiving benefits.

But in a heartbreaking and cruelly ironic twist, the struggling 64-year-old never got a chance to spend that money he was denied – and it is now being used to pay for his funeral.

This news was confirmed by Terry Craven, a former council benefits advisor who took up Mr Smith’s case and helped him to victory over the DWP.

Speaking to the ECHO, Terry said he was still coming to terms with the news of Mr Smith’s death.

He said: “I was shocked when I found out – I’m still in a state of shock to be honest with you.

“Stephen was a nice man who had fallen on hard times – he asked the government to help him and he got humiliated.”

The cause of Mr Smith’s death has not yet been confirmed, but Terry said he is certain that the ordeal he went through in trying to get the benefits he needed will not have helped his deteriorating health.

He said: “I’ve got no doubt that his treatment was a contributory factor to his health getting worse – if only people had heeded warnings from his doctor, who said that if he was found to be fit to find work, it would lead to a serious deterioration in his health.”

He added: “That money that the DWP eventually paid back to him, he never got a chance to spend it.

“That is now going to be used to pay for his funeral – which is the ultimate kick in the teeth. Personally I think the government should step up and pay for it.”

Thousands of people have reacted with anger, sadness and frustration at how Mr Smith was treated in the build-up to his death.

But Terry, who operates his benefits advice and support organisation from The Casa Community Centre in Hope Street, said he has many more harrowing cases like Mr Smith’s on his books.

He said: “We are struggling, we don’t have any funding and we have come close to shutting down – but there are too many people asking for help.”

Sex, With These Hips?

April 23, 2019

Have you ever been lost in a passionate moment only to realise your hips are about to dislocate?

Well, Xandra Lee has been in that precarious place more times than she’d like to remember and set about writing a sex and relationships manual for people with ‘dodgy hips’.

Diagnosed with hip dysplasia as a teenager, she quickly realised there was no information out there – medical or otherwise – for safe, painless sex, especially if, like her, you are a younger person.

So, she set about changing that by writing a book: Sex, with these Hips?.

The other guest on the programme is Mel Halacre, a mental health counsellor who specialises in disability. She talks to Ouch about how the constant drip drip drip of low-level discrimination can build into bigger problems, and provides useful coping strategies for listeners.

George Alagiah’s Guilt Over Using Disabled Toilet With Bowel Cancer

April 23, 2019

George Alagiah has spoken of his guilt at having to use disabled toilets while having no visible disability.

The BBC newsreader, who has stage four bowel cancer, used the facilities in the past because of having a stoma bag attached to his stomach.

When disabled people saw him using the toilets he would feel the need to “apologise and explain”, he said.

Talking about living with the bag for the first time, Alagiah said it also required him to get his suits altered.

A stoma bag is an opening in the stomach where faeces are collected in a bag after part or all of the bowel is removed due to a disease or obstruction.

Alagiah, 63, returned to presenting duties in January this year after his bowel cancer returned in December 2017.

He no longer has a stoma bag after undergoing reversal treatment.

‘Apologise and explain’

Speaking about living with a stoma on In Conversation With George Alagiah: A Bowel Cancer UK Podcast, he said: “I used to find it difficult. I had a stoma but I didn’t look disabled, and I would be turning the key in a disabled loo in a motorway service station or something.

“And if there was a queue and somebody obviously disabled (was there), I used to feel guilty and feel like I needed to apologise and explain.

“The reason you need to go into a disabled loo is that you just need a little bit of space, to get the contents of your blue bag out and the sanitising equipment and so on.”

The charity Crohn’s & Colitis UK has launched a campaign calling for companies to install new signs on disabled toilets to explain that not all disabilities are visible.

It says people with such “invisible disabilities” are subjected to discrimination for using facilities they urgently need.

In 2017, Tottenham Hotspur became the first football club to feature such a slogan on their disabled toilets.

Alagiah also spoke of adjusting his clothes and changing his outfits to fit the bag, which included taking his suits out and wearing braces.

Speaking about his concerns over returning to work with the bag, he said: “I [was] always looking around at my colleagues and thinking, ‘Can they smell anything, can they hear anything?”‘

Dr Lisa Wilde, from Bowel Cancer UK, said stomas remained a “hidden part of living with the disease”.

She said: “We know that many of our supporters face everyday challenges to manage their stoma, and one of these is accessing disabled toilets, as it’s not a visible disability.

“We’re determined to improve the quality of life of everyone affected by bowel cancer and to help people live well with a stoma.”

Alagiah hosts the first series of Bowel Cancer UK’s podcasts, interviewing supporters and leading experts on the disease, as well as discussing his own treatment and diagnosis.

Bowel cancer is the UK’s fourth most common cancer and second biggest killer cancer with more than 16,000 people dying from the disease every year.

It is treatable and can be curable, especially if diagnosed early.

Tribunal Restores Benefit Payments To Acid Attack Victim

April 23, 2019

The victim of an acid attack who suffered 50% burns to her face and body has overturned an attempt to strip her of a disability benefit after being told she was fit for work.

The woman, who finds it difficult to sit or stand for long without pain, and is bed-bound for weeks after reconstructive operations, appealed after officials awarded her zero points at an assessment to test her eligibility for disability employment benefit.

A tribunal hearing on Thursday took less than 20 minutes to uphold her appeal, awarding her 24 points, and restoring her employment and support allowance (ESA). The appeal panel, consisting of a judge and a medical doctor, paid tribute to the woman’s courage.

Her solicitor, Sophie Earnshaw of Hammersmith and Fulham Law Centre in west London, said the case was one of the most upsetting of its kind she had been involved in.

She said: “This is a truly horrific example of the Department for Work and Pensions’ poor decision-making when it comes to disability benefits.”

The DWP said it was unable to comment on an individual case but insisted it was committed to ensuring people received the benefits they were entitled to, and would review cases to learn lessons where they had fallen short of “high standards” and ensure claimants were paid any money owing to them as a result.

The case comes amid continued concern over the reliability of the assessments for both ESA and personal independence payment benefits, which are carried out by private contractors on behalf of the DWP. Nearly three-quarters of ESA appeal and 73% of PIP appeals are successful.

The woman, who wishes to remain anonymous, is a British citizen who suffers from constant pain, trauma, headaches and isolation. She rarely leaves her home except to go to her GP, the hospital or local shops.

Having received ESA for several years, she was reassessed and found fit for work by a healthcare specialist employed by the private firm Maximus last October, not long after she had undergone an operation to reconstruct part of her ear.

She then submitted her case to the DWP for reconsideration, but officials upheld the assessment award of zero points. Had she not subsequently appealed the decision, she would have been moved on to universal credit, seen her benefit income cut, and be required to spend 35 hours a week looking for work or face sanctions.

Earnshaw said the failure of the work capability assessment to properly assess her client’s health was compounded by the DWP’s failure to take into account the evidence presented to them. The DWP did not send a representative to the tribunal hearing, which was held in London.

She said: “This case should not have been before a tribunal. Already our client is suffering from life-changing burns that have a significant impact on her physical and mental health. The anxiety of appealing the decision and attending a tribunal has been extremely upsetting.”

The woman was referred to Hammersmith and Fulham Law Centre by her local Citizens Advice Bureau. The removal of welfare benefits from the scope of legal aid in 2013 meant specialist support for her appeal was only possible through a pro bono project the law centre runs with the City law firm Debevoise & Plimpton.

The DWP was heavily criticised earlier this year after a Liverpool man, Stephen Smith, 64, was denied benefits and deemed fit for work, despite multiple debilitating illnesses that shrank his weight to 38kg (6st) and left him barely able to walk.

Assistance Dog Changed Life- But Made Disability Visible

April 18, 2019

Almost a year ago exactly, I became the handler of an assistance dog, after a long and rigorous process involving an in-house assessment, a medical assessment and a recommendation from my psychiatrist and my GP respectively.

Almost a year ago, I started working every week with a professional trainer so that both the dog and I could learn what to do.

And suddenly, almost a year ago, my largely hidden disability became startlingly visible, and I’m still getting used to what this means.

My instinct here is to tell you about my illness, my disability, but I’m not going to do it. I’m not going to do it because the specifics don’t matter, and because one of the things that has amazed me about having an assistance dog in public is the number of people – complete strangers, people I’ve only just been introduced to – who immediately ask me, “How does she assist you?”

And while I understand where this question is coming from – aside from Guide Dogs, assistance dogs are still a fairly new phenomenon – it’s a startlingly invasive request. Because what they’re really asking is that I explain my diagnosis, and the way that it affects me in the world, and reveal some of the things that might go wrong for me in the next few hours. And though I know this isn’t their intention, it always makes me feel like I have to prove that I’m unwell and not just bringing my dog to the cinema because I’m a deluded hipster who treats my pet like my first-born child.

All you need to know, I guess, is that Virginia has made a marked difference in my life. That there are things that I am able to do now that I could not before – and that this is all that anyone can hope for in any kind of disability aid.

Whenever I take Virginia with me somewhere new I always have to brace myself because our entry is so often questioned, if not outright refused. Usually, the staff are great, and the moment I point out what her vest means they apologise profusely – but then the questions start up again. Either that or it’s a customer that intervenes: the man in the greengrocer who said I was disgusting for bringing my dog into the shop and stood over me and shouted as much while the staff stood idly by; the woman on the bus who kept repeating to her friend, loudly and unsubtly, “I can’t believe they’re letting dogs on buses now.”

Once, it was a café owner, who came over to my table to let me know that, after the last time I had been there, someone had left a zero-star review on social media because there’d been a dog inside. “A zero-star review,” he kept saying, and I knew he wanted me to say that I was sorry, but that’s a thing that I refuse to do.


I know that a lot of this confusion and hostility is because of unfamiliarity – because people still aren’t used to seeing assistance dogs, and especially not assistance dogs that aren’t the labradors that organisations like Guide Dogs exclusively use. Virginia is a small cavoodle; there’s a part of me that’s embarrassed, sometimes, that I have such a fashionable dog but her breed is perfect for this kind of work – loyal, affectionate (even to a fault), smart without being highly strung, and with the added bonus of fur that doesn’t shed. I chose her for these reasons (and because she was undersized, the runt of her litter, which I figured we both had in common). But any kind of dog can do this kind of work – in the organisation we are working with, there are German shepherds, greyhounds, ridgebacks, terriers, even a chihuahua or two. None of these look the way people assume an assistance dog should.

Strangers ask me often, who are you training her for? And I used to answer, slowly and carefully, that the system works slightly differently for these kinds of dogs, that they train with their handlers, and a trainer, from the beginning rather than being raised by volunteers like Guide Dogs are. But now I just say, “for me”, and have to stop myself from adding, “that’s right, this here is what crazy looks like”.

Here are some of the things that assistance dogs can do: they can let their handler know when they’re on the edge of a panic attack or dissociative attack, because they can smell changes in the hormone content of their sweat, and then they can take their handler somewhere safe, or offer them tactile comfort. They can alert their handler if they’re about to faint or have a seizure. They can find their handler’s friends in a crowd, or wake them from the night-terror dreams that are common in people with PTSD. They can intervene in the sensory meltdowns that people on the autism spectrum often experience, or put pressure on specific parts of the body to assist with bio-feedback, with bringing the heart rate or breathing back under control. They can be an anchor, or a buffer, or just one thing at least that has your back. Unless, of course, someone distracts them (it surprised me, and still does, how many people try to distract Virginia, clapping on their knees or making kissy-noises or clicking their tongues, swooping in for a pat or trying to get her to play. It’s spectacularly unhelpful, and sometimes downright dangerous).

The problem isn’t that I’m unhappy explaining these things, even to strangers, or that I’m uncomfortable. I’m not. I speak and write often about mental illness and my own conditions because I think it is important, because I know first-hand how damaging silence and stigma can be, how the shame I felt about my illness kept me from even recognising it for what it was for years. And I know that I’m the “right” kind of crazy – unthreatening, and a little kooky, sure, but by and large adhering to social mores and saving most of my meltdowns for when I’m at home or on my own. I know it’s easier for me to speak, that is, than it is for many other people in my situation, and that almost always the people who are asking questions are genuinely curious.

It’s just that it gets exhausting. And I’m sick of people talking to me about my disability aid, instead of just talking to me.

ESA Errors Expected To Cost £1Billion To Fix

April 17, 2019

A £1 billion bill is expected for fixing botched disability benefits, MPs have warned.

Vulnerable claimants lost out on £340 million support due to systemic errors when disability payments were combined into the single Employment Support Allowance (ESA) payment from 2011.

The Department for Work and Pensions (DWP) claimed to have corrected the underlying problem, but in February was forced to admit that 30,000 extra cases had been identified – despite new guidance being issued.

The DWP has now tripled the number of staff trying to fix the system, from 400 to 1,200, and DWP select Committee chairman Frank Field said the cost is now expected to be close to £1 billion.

Mr Field said: “DWP has been forced to admit that just the admin of fixing its own catastrophic incompetence is going to add another £40 million to the cost of this serially botched operation.

“Imagine what that money could have done instead for families across the country who are struggling to feed their children and heat their homes.”

Labour MP Mr Field criticised the “awful, painful, error-ridden” assessment process and “miserable and lengthy” appeal process, which has meant tens of thousands of disabled people have not been given money they were owed.

The Birkenhead MP said DWP was now headed for another billion pound scandal as staff continued to wrongly refuse disabled people the support they need.

“You might think that this shameful, damaging waste would at least focus minds at DWP on making sure this never, ever happened again,” he said.

“But we are already starting to hear about people whose incomes have been slashed because they’ve been wrongly advised to claim Universal Credit, and there’s no way back.

“If Ministers want to avoid another billion pound scandal, they need to get a grip on this – and fast.”

A new letter from a top civil servant at the DWP confirms the latest expected cost for administering payments to 310,000 underpaid claimants would be £21 million in 2018/19 and £19 million in 2019/20.

The letter also confirms 400 extra staff were recruited in 2018/19 “directly to support the ESA underpayment exercise”.

The DWP estimates it will pay £920 million in past underpayments over the financial years 2017/18, to 2019/20, a decrease from the £970 million forecast that informed Autumn Budget 2018.

A DWP spokeswoman said: “It is only right that we prioritise ensuring all claimants affected by past ESA underpayments get the money they are owed, and we have paid over £300 million so far.

“We have allocated the staffing and resources needed to complete this as soon as possible, without impacting any of our other customer activity and support.”

London To Host Rearranged 2019 World Para-Swimming Championships

April 16, 2019

London will host the rearranged 2019 World Para-swimming Championships in September.

The event was due to be held in Malaysia from 29 July but the nation was stripped of the hosting rights for refusing to let Israelis compete.

Malaysia, which is a majority Muslim country, banned the athletes because of what Kuala Lumpur sees as Israel’s poor treatment of Palestinians.

The event will take place at the London Aquatics Centre from 9-15 September.

“I cannot thank the Mayor of London, UK Sport and British Swimming enough for their outstanding efforts stepping in to stage and support this Championships, a key Tokyo 2020 qualifier, at such short notice,” said International Paralympic Committee (IPC) president Andrew Parsons.

“I have no doubt the whole of the Para-swimming community will be appreciative of the efforts they have made to organise this competition.

“We appreciate that the dates are not identical to the ones we had originally planned in Malaysia and these new dates will have an impact on the performance programmes of Para-swimmers.

“However, following the cancellation of Malaysia and the opening of a new bidding process it simply was not feasible to organise a new event for the end of July and early August.”

About 600 athletes from 60 countries are expected to race at London 2019, which comes just four years after Great Britain last hosted the World Para-swimming Championships in Glasgow.

London 2019 will be the first time a global Para-swimming competition has been held at the London Aquatics Centre since the 2012 Paralympics, and will be a key qualification competition for the Tokyo Paralympics next year.

“It will be the first time I get to experience a home crowd at a major event, so having everyone behind me is something I’m really looking forward to,” said Great Britain’s 2016 Paralympic gold medallist Ellie Robinson.

“I think the World Championships and Europeans between the Paralympics are really important because they enable you to get ready for the next Games. To know we have one that will be run smoothly is comforting to know.”

Great Britain’s Alice Tai, a double Paralympic medallist from Rio 2016, added: “For me it’s absolutely insane and I’m so excited to have a home World Championships because all of my family and friends can all come and watch and that support will make a real difference.

“Having won in Glasgow [2015], standing on the top of the podium and having the whole crowd sing the national anthem with you, that’s one of the most special moments ever, so hopefully that can be recreated.”

Meet Mandy Mouse, Peppa Pig’s New Friend In A Wheelchair

April 16, 2019

Same Difference has just found out about Mandy Mouse, Peppa Pig’s new friend in a wheelchair.

 

We are thrilled that she’s been included in the smash hit programme. Children who learn about difference from an early age grow into sensitive, understanding adults who learn how to show empathy, not unnecessary sympathy or pity. They learn how to make everyone feel wanted and truly welcomed, everywhere.

 

We are even more thrilled to see this simple introduction to Mandy Mouse, in which she simply squeaks hello and no one mentions her wheelchair. If only we could all have such an introduction on our first day at mainstream school!

We thank the team at Peppa Pig for creating Mandy Mouse, and hope that she continues to be used to represent disability positively.

Girl With Autism Was Put In Isolation Booth 245 Times

April 15, 2019

A girl who tried to kill herself after spending months in an isolation booth at school has said she felt “alone, trapped and no-one seemed to care”.

The teenager, who has autism, had no direct teaching and ate her lunch in the room, away from friends.

Her mother said for months she was unaware of what was happening to her daughter and called on the government to improve guidance for schools.

The Department for Education says pupil welfare must always be put first.

Its guidelines say children should be in isolation for no longer than is necessary.

‘Sit in silence’

In a letter to the BBC’s Victoria Derbyshire programme, the teenager – who we are calling “Sophie” – said: “I decided I’d rather die than be in isolation because of the mood it left me in.

“I felt alone and trapped at school for such a long time that I felt as though it would be best, as no-one seemed to care anyway.”

Her mother, “Philippa”, estimates that her daughter was placed in an isolation booth at her secondary school more than 240 times in total – beginning in year seven but becoming more frequent in years 10 and 11.

The 16-year-old spent every school day from mid-January to March this year in the room, the family say.

She explained: “The room has six booths with a small workspace and sides so you cannot see other people.

“You have to sit in silence and be escorted to the toilet which is embarrassing.”

On one occasion, Sophie said: “I begged the teachers to ring my Mum as I didn’t want to be alone any more.

“They refused and took my phone away, leaving me and a teacher I didn’t know in an enclosed room.”

After she tried to take her own life, Sophie returned to school but said she would “dread each day” when she was again placed in isolation.

“I would often have panic attacks and feel claustrophobic,” she explained.

“I feel as though isolation rooms should be banned.

“They tend to make students feel isolated and helpless, knocking their self-esteem.

“Due to the amount of stress and trauma throughout school I now suffer with depression and anxiety.”

According to a BBC investigation last year, more than 200 pupils spent at least five straight days in isolation booths in schools in England last year.

And more than 5,000 children with special educational needs also attended isolation rooms at some stage.

Government guidance in England says schools are free to decide how long pupils should be kept in isolation, but they should be there “no longer than is necessary”.

The guidelines also say that in order for isolation to be lawful as a punishment it should be “reasonable” in all circumstances, and factors such as special educational needs should be taken into account.

Schools do not need to record use or report to parents that their child has been sent to isolation, although many do.

The school behaviour expert, Tom Bennett, who has advised the government, has said isolation rooms can be effective in tackling disruption in classrooms, and preventing fixed-term exclusions.

“When you’re a lone adult with a class of 25 pupils, it only take two people to really persistently wilfully misbehave for that lesson to be completely detonated,” he told the BBC in November.

Philippa told the Victoria Derbyshire programme Sophie was now a “completely different child”.

Sophie has selective mutism – she did not speak until the age of eight – as well as autism, and can be “defiant” and “disobedient”, her mother said – but this was “all part of her diagnosis”.

She added that Sophie – who “does not deal with change very well” as part of her condition – was “regularly” placed in isolation after she reacted badly to a change in teachers, classroom and routine.

She said as a result her communication had regressed.

“Being isolated from her friends… made her become more internal – stop talking, stop communicating.”

Philippa added that the school had also been aware of her daughter’s plans to self-harm before she tried to take her own life, through a letter the teenager had written to them.

But the school did not make her aware of the letter at the time, she said.

When she discovered that Sophie had been in isolation booths – by now in year 11 at school – she said she felt “traumatised”.

“I can’t even begin to explain how it makes you feel knowing every day I’d send her into the school and she felt that alone that she wanted to take her own life.”

The family’s solicitors have written to the government demanding action and improvements to isolation guidelines.

Philippa said she understood the use of isolation booths in certain instances, but that it was not acceptable to use them as an “ongoing punishment”.

“It’s causing severe mental health problems. Schools should be held responsible.”

DWP To Restore The Full PIP Of Claimant It Called ‘Lying Bitch’

April 15, 2019

The Department of Work and Pensions (DWP) has offered to restore the full benefits of a claimant whom it called a “lying bitch” in legal papers after she appealed against a decision to strip her of some of her disability entitlements.

The DWP has apologised to the woman and, following outrage when it emerged the insult had been inserted into appeal tribunal papers, has said it no longer plans to cut her Personal Independence Payment (PIP) entitlement.

It also said she would be considered for a “consolatory payment”, issued in exceptional cases where departmental action had resulted in claimants suffering “gross embarrassment, humiliation, unnecessary personal intrusion and … severe distress”.

The incident, which was revealed with the claimant’s permission last month by her welfare advice worker, was condemned at the time as exposing “a canteen culture of contempt among many decision makers at the DWP”.

The DWP’s offer to the claimant to drop its previously vigorous defence of the original PIP decision is likely to be seen as a damage-limitation exercise, amid continuing scepticism over the accuracy and reliability of disability benefit assessments.

Just a fortnight ago, the DWP was preparing to go to court to defend its PIP decision in the case – in effect arguing the woman was not disabled enough to claim mobility support. It had already reviewed the case internally in a process called mandatory reconsideration and upheld the initial assessment.

However, since the Guardian reported the case, the department has hastily reconsidered its verdict after yet again reviewing the available medical evidence. It has apologised to the woman and told her it would like her to agree to close the case before it is brought before a judge at tribunal.

A redacted copy of a letter, again published with the woman’s permission on the Rightsnet website by her advisor, Derek Stainsby, of Plumstead Community Law Centre, reveals that a DWP official wrote to the woman earlier this week offering “sincere apologies” for the distress the incident had caused her.

It said: “I want to assure you the department takes these matters extremely seriously. We expect the highest standards of professionalism from all colleagues and are thoroughly investigating the circumstances brought to our attention. Whilst I cannot go into the details I want to assure you that appropriate action will be taken once that investigation is concluded.”

It continued that officials had “fully reviewed” her case, using a range of evidence already in its possession, and concluded that “you are entitled to mobility [payments] at the standard rate in addition to standard rate for daily living” – the benefits she was entitled to before she was reassessed.

The woman has yet to decide whether to accept the DWP’s offer to drop the tribunal case and reinstate her contested benefits.

The offending passage was contained in the DWP’s submission to her PIP appeal tribunal. In it, an official questioned whether she was genuinely entitled to a carer’s allowance, a benefit for people who care for another person for at least 35 hours a week.

The official wrote: “In this lying bitches [sic] case she is receiving the mid-rate carers [sic] allowance component for providing day time supervision to another disabled person. The tribunal may wish to explore this further.”

A DWP spokesperson said: “We have apologised for any distress caused and are thoroughly investigating this matter. Any behaviour like this is completely unacceptable and we will take appropriate action against any staff who breach our clear standards.”

Last month the thinktank Demos called for the DWP to be stripped of its responsibility for providing disability benefits because it said years of failings have eroded trust among ill and disabled people.

There is widespread concern that PIP assessments, which are carried out by private firms on behalf of the DWP, are inaccurate and unfairly discriminate against mentally-ill claimants. Nationally, at least 70% of appeals against PIP decisions are successful.

**POSSIBLE TW** Claimant Left Sarcastic Suicide Note Thanking The DWP For UC

April 12, 2019

A man who took his own life after running out of money for his electricity meter left a suicide note sarcastically “thanking” Universal Credit bosses.

Brian Sycamore was having trouble getting the controversial benefit, his brother told his inquest.

Mr Sycamore, of Long Eaton, wrote the note on his phone before taking an overdose of pills.

The 62-year-old had suffered with back pain for many years but his brother claimed the problems he was having with Universal Credit were the “trigger” for his suicide.

Mr Sycamore’s housemate Paul Baker found him dead in his bed with a large amount of medication on his bedside table on September 30, 2017.

An inquest at Derby and Derbyshire Coroner’s Court yesterday heard that all the medication was legitimately prescribed to Mr Sycamore for his back conditions.

A GP said Mr Sycamore, of Bennett Street, had no record of mental health problems or previous suicide attempts, and a psychiatric doctor said he had never been admitted to Kingsway Hospital.

Assistant coroner Louise Pinder said Mr Sycamore’s brother, Henry Sycamore, believed he took his own life because of problems with his benefits.

She said: “Henry has said to us that he believes this was a deliberate act.

“He had been in pain for many years. But he believes the trigger was down to problems he was having with his Universal Credit.”

PC Mark Karim, of Derbyshire police, read a note that was left on Mr Sycamore’s unlocked phone.

He said: “There was a note that said ‘can you thank the people who work at the Department for Work and Pensions?’

“There was also a reference to the electricity meter running out.”

The coroner and PC Karim both agreed that the “thanks” in the note were intended to be sarcastic.

Housemate Mr Baker last saw Mr Sycamore alive two days before his death. Mr Baker spent the day before the suicide in bed, due to illness, but decided to check on Mr Sycamore when he stopped hearing noise coming from his room.

Mr Baker did not move the body but called East Midlands Ambulance Service paramedics, who recorded the time of death as 3.33pm, and who also called police to the scene.

A post-mortem carried out in Derby, and toxicology tests completed in Sheffield, found that Mr Sycamore had lethal levels of four different medicines in his system.

The coroner recorded Mr Sycamore’s death as “suicide” and said the cause of death was “mixed drug toxicity”.

However, while she did state that there was a note left on his phone, she did not refer to problems with Universal Credit as a cause or contributing factor when recording her conclusion.

Aquatica Orlando: The World’s First Autism-Friendly Water Park

April 12, 2019

It’s official: Aquatica Orlando is the first autism-certified water park in the world. Yup. The. World. 

The wave of theme park inclusiveness began back in 2018, when Sesame Place became the first ever autism-certified theme park, and we have a feeling this is just the beginning. According to an Instagram post from earlier this month, the water park has achieved their accreditation after collaborating with the International Board of Credentialing and Continuing Education Standards. But what does this really mean? 

Well, for starters the staff was required to participate in mandatory training on autism sensitivity, awareness, communication and motor skills (plus an exam). This is all, of course, to better help the staff when dealing with children and park attendees that have special needs. 

In addition, the park will now offer resources for pre-visit planning as well as sensory guides providing information on how individuals with any sensory-processing difficulties might be affected by different attractions. Guests can also visit the “quiet room” and “low sensory areas,” which provide adjustable lighting and comfortable seating areas for anyone to relax when needed. 

In the words of IBCCES board chairman Myron Pincomb, “With the rise in diagnosis rates of cognitive disorders, there is a huge need for these options and for organizations to make a long-lasting commitment to their guests.”  

A water park that can accommodate all of its guests equally? Now that’s something worth celebrating. 

One In Five With Parkinson’s Accused Of Being Drunk Finds Study

April 11, 2019

One in five people with Parkinson’s disease have been accused of being drunk because of their symptoms, according to a new survey.

Around 22% of respondents told the Parkinson’s UK study that others had believed they were under the influence of alcohol because of poor balance or slurred speech.

For a quarter of those who took part (24%), their slow movement and speech had been misinterpreted as an intellectual disability – and 10% said they had been laughed at.

More than half (57%) said they had gone so far as cancelling plans or avoiding social gatherings because they were embarrassed about their symptoms, or scared of how people may react to to them.

The charity received feedback from more than 2,300 UK adults living with the degenerative neurological condition, which can cause involuntary shaking and stiff or inflexible muscles.

An estimated 145,000 people were diagnosed with the condition in the UK last year and it can develop at any age.

Sky Sports presenter Dave Clark was diagnosed in 2011 and said he had been on the end of teasing because of the way the condition impacts him.

“I’ve been made fun of online because of the way Parkinson’s affects the muscles in my face,” he explained.

 

“And when my medication isn’t working it affects how I walk, and as a result I’ve been accused of being drunk by random people on the street.

“It’s upsetting, and 99% of the time it comes from people’s ignorance about Parkinson’s rather than any real intention to hurt. But it does.”

Parkinson’s UK has launched a campaign to address misconceptions about the condition in a bid to reduce the negative experiences of those who live with it.

Steve Ford, chief executive of the charity, said: “It’s heartbreaking that so many are cancelling or avoiding social situations due to embarrassment about their Parkinson’s symptoms, or fears about how people will react to them.

“We hope our new Parkinson’s Is campaign, which sees people across the UK share how the condition affects them, will help fight negative attitudes and correct misconceptions about this much misunderstood condition.”

A Disability Related Joke

April 11, 2019

Spotted on Facebook, shared in fun:

“I’m reading a horror story in Braille. Something bad is going to happen. I can feel it.”

Facebook Apologises For Saying Naked Disabled Woman Photo Was ‘Disturbing’

April 10, 2019

Facebook has apologised to a disability rights activist after he was told people might find images of disabled people “disturbing”.

Simon Sansome, who runs Ability Access, discovered Facebook had blocked his page from being shared with new users.

Facebook says its employee gave Simon incorrect information.

Instead, it says his page was blocked for featuring a naked picture of Vicky Balch, who was injured in the Alton Towers rollercoaster crash in 2015.

Simon spoke to a Facebook employee over the phone to find out why his page was no longer allowed to be shared.

He told Radio 1 Newsbeat that he “could not believe what was happening” when he was told people might find it “disturbing” to see pictures of disabled people on their feeds.

So he started recording the conversation.

“If it wasn’t recorded, nobody would have believed it,” he said.

The rollercoaster crash at Alton Towers in 2015 left Vicky Balch injured and needing to have her right leg amputated.

“That photo of Vicky has been on our page for a number of years now, and it’s a fantastic photo which is empowering women and people with disabilities.

“It’s a picture that’s been widely shared on social media, in newspapers and celebrated by our disabled community.”

Vicky chose not to speak to us for this article, but when the pictures first came out following her 21st birthday in 2016, she said they made her feel “amazing”.

Facebook told Radio 1 Newsbeat: “What Mr Sansome was told is incorrect and should not have been said – and we’ve apologised unreservedly for that.”

The tech giant said that Simon’s post was rejected for “depicting adult content, as there is a partially covered topless female in the video”.

Facebook explained that because the post in question was an advert, it was subject to stricter standards than normal posts.

“If Mr Sansome is able to remove this particular image from the video, the advert would be approved and allowed to run,” it added.

Simon said he has no intention of removing the image.

“It is a picture of a wonderful, brave woman showing off her disability,” he said.

‘Steep Rise’ In Patients Struggling To Get Epilepsy Drugs

April 10, 2019

There has been a “steep rise” in the number of people struggling to get hold of medication which helps control their seizures, the Epilepsy Society says.

The charity says “anxiety and stress” are putting patients at greater risk of seizures.

It is calling for the government to commission an urgent review of the medicines supply chain.

Although uncertainties around Brexit have highlighted medicine shortages, there has been a problem for years.

Last week the drug company Sanofi said there were shortages of an epilepsy drug, sodium valproate, in some areas because of supply disruption at a factory last year, and not related to Brexit.

The company added that the situation was improving.

A Department of Health and Social Care spokesperson said: “As Sanofi has made clear, these issues are unrelated to our exit from the EU and they have followed the well-established processes we have to manage the small number of supply problems that may arise at any one time.”

‘Not good enough’

The Epilepsy Society said rising numbers of people had been contacting the charity’s helpline worried about getting hold of medication.

The drugs causing most concern are:

  • Epilim (sodium valproate)
  • Epanutin (phenytoin)
  • Topamax (topiramate)
  • Neurontin (gabapentin)
  • Carbagen (carbamazepine)
  • Diazepam (rectal diazepam)

Clare Pelham, chief executive of the Epilepsy Society said: “It is simply not good enough for drugs manufacturers to say ‘production issues’ or ‘just-in-time manufacture problems’ and shrug their shoulders whenever a shortage occurs.

“Surely the least that we can do – government, charities and the pharmaceutical industry – is to work together to ensure that the supply of this essential medication is reliable every day, and every month – year in and year out.

“So that when the Brexit spotlight has moved on, people with epilepsy will be in a much better place.”

Epilepsy is a common serious neurological condition which affects more than half a million people in the UK.

At the same time, a leading pharmaceutical group has said there are increasing problems obtaining some medicines in England.

The number of drugs on a list of those affected by price rises and supply shortages is at the highest level since records were first compiled in 2014.

This consists of drugs where the government agrees to compensate pharmacists for higher costs. In March there were 96 medicines on the list, known as price concessions – double the number last autumn.

‘Increasing supply problems’

The Pharmaceutical Services Negotiating Committee (PSNC) warned MPs in December that there were supply shortages due to several factors, including Brexit contingency planning. The Committee indicates the situation has become more acute since then.

While noting that there have always been fluctuations in the number of medicines which are in short supply, PSNC chief executive Simon Dukes added: “Community pharmacies are reporting increasing problems sourcing some generic medicines for their patients.”

The government told the pharmaceutical industry to build up stockpiles of six weeks’ supply of medicines, as part of contingency planning for a no-deal Brexit.

Other measures – including the chartering of ferries and aircraft – have been adopted by officials.

A Department of Health spokesperson said: “We are confident that, if everyone does what they need to do, the supply of medicines should be uninterrupted in the event of a no-deal.”

Facebook Criticised After Blocking A Group Over A Photo Of A Naked Disabled Woman

April 10, 2019

Facebook has come under fire from disability campaigners after the social network allegedly blocked a growing group from inviting new members over a contentious photo.

Ability Access describes itself as one of Facebook’s largest disability groups, boasting over 12,000 members and a global reach of over 5 million people and 1.5 million interactions.

But a photo showing a naked disabled woman was removed by Facebook after it received over 3,000 ‘likes’ from other Facebook users.

The photo shows a naked woman who has seemingly had one of her legs amputated, but the reason behind the amputation has not been disclosed. Sadly, we’ve been unable to verify the authenticity of the image.

Photo Credit: Andrew Wood Photography, via Public Domain (Facebook).

After contacting the Facebook Marketing Team the group was allegedly told by a representative that other users could be replulsed by the image, and so it was deleted by Facebook moderators.

The moderator is said to have told the goup: “You will have to understand that some people see disability as disturbing, you will have to think about it like that”.

“I have never come across a page that promotes disability”, they added.

Group admin Simon asked: “So, to promote my page, I need to go through customer service again, because I have been banned from promoting my page on disability”.

To which the operator said: “Yes, yes”.

The group has described Facebook’s actions as “shocking and quite sad”, adding that “millions of people with disabilities use Facebook as their main communication too”.

Facebook has since apologised to the group.

“We apologies profusely to Simon Sansome and the Ability Access community that they had this experience, and wanted to take the time to help explain why this happened.

“What Mr. Sansome was told is incorrect and should not have been said. The advert in question was not rejected for featuring disturbing content.

“It was, however, rejected for depicting adult content as there is a partially covered topless female in the video.

“If Mr. Sansome is able to remove this particular image from the video, the advert would be approved and allowed to run.

“We are investigating what happened here and will provide additional training to the team that spoke with Mr. Sansome.

“This community, like many other Groups and Pages for disability in the UK, is doing great work and we’re proud that they are using Facebook to reach people.”

Disabled Grenfell Survivor Was In Hotel Without Accessible Bathroom

April 9, 2019

A disabled Grenfell Tower survivor has accused Kensington and Chelsea Council of robbing her of her dignity and making her trauma worse by putting her up in accommodation where she was unable to use the bathroom.

In her first interview since the fire, Mariko Toyoshima-Lewis, 43, said she had had to leave the hotel where she lived with her three young children for 16 months, every time she needed to use the toilet or have a shower, because her wheelchair would not fit into the bathroom.

When she was unable to make the journey to an accessible bathroom in another hotel five minutes away, she had to use a commode, which her children Kohana, 11, Taiyou, 9, and Aozora, 7, had to empty for her. Because she was unable to get into the bathroom she was forced to wash her son in a bucket.

“The council do not care about human dignity,” said Toyoshima-Lewis, a former teacher from Japan. “The way they have treated me and my children has made our trauma from the fire so much worse.”

Toyoshima-Lewis’s account of her treatment comes almost two years after the Grenfell Tower fire, which left 202 households in need of rehousing. She and her children are among the 19 that are still in temporary accommodation, hotels or serviced apartments.

Their wait for a permanent home has been beset with problems. The children have multiple food allergies and have had hospital treatment on several occasions after having an adverse reaction to the hotel food.

Toyoshima-Lewis struggled to transfer from her wheelchair to the hotel bed as it was too narrow and she could not reach the keyhole of the hotel room door. Kohana used the bathroom to do her homework in as there was no other quiet space available. She obtained a microwave and said she had to survive on Pot Noodles with the water boiled in the microwave as she was unable to reach the kettle.

After the fire the council promised the family permanent accessible accommodation, but almost two years on she is still waiting for it to be completed. After spending 18 months in hotel accommodation, Toyoshima-Lewis in desperation accepted some temporary accommodation in Ladbroke Grove last December that it is not fully adapted for a wheelchair user.

There is a gleaming kitchen that she is unable to use because she cannot reach the sink, stove or cupboards in her wheelchair. Instead the council has installed a table for her to use.

Toyoshima-Lewis and her children moved into Grenfell Tower in July 2016. She is confined to a wheelchair because of a degenerative disc problem and has other health problems.

Toyoshima-Lewis and her family lived in flat 9 on the third floor of Grenfell Tower. Like the hotel bathroom, her Grenfell front door was too narrow to fit a wheelchair into and she had to leave her electric wheelchair and scooter outside and transfer to a smaller manual wheelchair inside the flat.

On the night of the fire her children and her ex-husband, who was with the family at the time, were rescued first. The children did not want to be separated from their mother but she persuaded them to go with the firefighters. She was terrified she would never see them again.

“I kept smiling at my children,” she said. “I didn’t want them to panic. I told them: ‘Mummy is coming later.’” She demonstrated how she forced herself to smile through her terror to try to keep her children calm. Then she became overwhelmed by vivid memories of that horrific night. “It was so hot, I prayed for my children and for their future,” she said.

For months afterwards her children were too scared to sleep in case they were separated from her again. All are still deeply traumatised and are desperate to move into safe, permanent accommodation.

“The council don’t care about human dignity. I was too ashamed to speak out before about what has been happening to me since the fire but now I want people to know what is going on. Enough is enough.”

Her solicitor, Albert Harwood of Howe+Co solicitors, said: “Despite assurances from the council that the family would be provided with a fully disabled-adapted permanent home, 22 months later they are still waiting. Mariko is a very private and dignified woman and was very reluctant to share her story publicly. But she felt that for the sake of her children and other disabled people facing similar problems, she had no choice but to speak out.”

A Kensington and Chelsea Council spokesperson said: “Our council continues to do all we can to make sure those affected by the Grenfell tragedy receive the care and support they need and that they are rehoused at a pace that suits them. We tried every route to secure more homes quickly. Alongside the home-buying programme, we have been working hard to make the properties we have bought into places that meet families’ needs and that they can call home. We have been working with them to do so in incredibly complex circumstances. We are nearly there, but we will not be rushing the last few families to meet artificial deadlines.”

DWP Offering Claimants More Money To Drop Appeals

April 9, 2019

With many thanks to the Scottish Unemployed Workers Network.

 

Here at Advicenow we have heard from several claimants who, after submitting an appeal, have been contacted by the DWP with a better offer than their first award, if they drop the appeal.

Whilst claimants getting what they are entitled to without having to go to a hearing is a good thing, we are concerned by reports from our users about some of their experiences. We want to know more about this.

We have heard from several claimants who have been contacted with offers of an increased award immediately after submitting the appeal form and without submitting any new evidence. This of course begs the question as to why the award wasn’t changed at the Mandatory Reconsideration stage.

We have also heard from a number of claimants who felt the DWP was trying to pressure into accepting a lower award than they believe they are entitled to.

PIP Online Tribunals Begin This Month

April 8, 2019

With many thanks to Benefits And Work.

 

The Tribunals Service has announced the start of Continuous Online Resolution (COR) for PIP claimants from this month, beginning with a trial scheme in the Midlands. The new system obliges most claimants to go through an online appeal before they can progress to an oral hearing.

As we explained last month, under COR, most PIP and ESA claimants who appeal a decision will have their appeal looked at by an online tribunal panel.

The panel will review all the documents relating to the appeal and will then ask the appellant any further questions they think may be relevant.

Once the tribunal has all the information it thinks it needs, it gives the claimant and the DWP a ‘preliminary view’.

This is, in reality, a decision, telling the claimant what award of PIP, for example, the panel thinks they should get and the reasons for reaching the decision.

The claimant is given a deadline to respond and say whether they agree with the decision.

If the claimant agrees, and the DWP do not object, then this becomes the final decision.

If the claimant does not agree, they have the right to have the case heard at an oral hearing in the normal way.

The pilot scheme will be launched in mid-April. It will be trialled by Midlands, Sutton and North-West Tribunal Panels, inviting up to 1000 appellants to participate in the trial on a rolling basis in groups of 50.

Benefits and Work would very much like to hear from anyone who finds themselves involved in the pilot.

The Tribunals Service has also announced other steps in its aim to digitise appeals, including:

The Submit Your Appeal service will be extended to other benefits as well as the current PIP and ESA appeals, this summer. Appellants can complete and submit appeals online and can upload supporting evidence

Track Your Appeals and Notifications for PIP and ESA will come out of beta and be available nationally. It is a free sign up service that allows appellants and their representatives to track their progress in the appeal process using an online progress tracking bar. Text and email notifications provide status updates so that appellants know what stage their appeal has reached and the date and time of the next hearing, where appropriate.

Two new services will start this Autumn. Manage Your Appeal and Manage Post Hearing Appeals will enable appellants to view their appeal online, make applications, confirm hearing dates and submit expenses claims.

You can download a copy of the Tribunals Service modernisation plans.