We have received this prompt and positive response to our complaint about people being refused permission to take notes in PIP assessments. We hope that the assessors also respond as positively. If anyone suffers similar problems, please let us know.
From PIP Customer Service Support at Independent Assessment Services (the new name for Atos Healthcare):
I am sorry to hear that you have encountered two occasions where the Health Professional has not allowed the accompanying individual to take notes.
This is something, that as an organisation, we allow and not something that should be refused.
I will certainly speak to the assessment centre involved to prevent this from happening in the future.
It’s all over now, isn’t it? With Brexit in focus and the coalition government long out of office, it would be easy to believe the Tories’ brutal “welfare” policies were a thing of the past. The bedroom tax is old news. The once notorious “fit for work” tests are no longer set pieces in ministers’ press speeches. Benefit sanctions – for years, the epitome of post-crash “tough on welfare” posture – are a dated crisis.
Except, that’s what the Tories would like you to think. The language of disabled people “languishing” on sickness benefits may have quietened and enthusiasm for austerity – now an electoral risk – be spoken of less zealously, but the policies have gone nowhere. For proof, take a look at the official figures released this month showing the scale of benefit sanctions against disabled and chronically ill people since the Conservatives first introduced stricter measures. More than 70,000 people on the out-of-work sickness benefit (employment and support allowance) ESA had their benefits stopped between December 2012 and December 2016. More than 5,000 had them stopped for at least six months. That’s wheelchair users and people with learning difficulties left with bare cupboards and cold homes.
ESA sanctions are made for a fixed period of one, two or four weeks. But they carry on indefinitely if claimants are deemed not to follow jobcentre rules. The vast majority of recent ESA sanctions – more than 90% since December 2015 – have been a punishment for people failing to take part in “work-related activity”: anything from skills training or drawing up a CV to community work placements. Disabled people going through the system repeatedly report this can mean being sanctioned for not going to a meeting despite being in too much pain to get out of bed.
This is not a coincidence but, rather, reflective of a political culture that has fetishised getting disabled people into work at any cost. It’s the same thinking that from April resulted in many people on ESA permanently losing £30 a week under the guise that it would give them an “incentive to work”. Mid-recession, and on the brink of the biggest squeeze on workers’ living standards in decades, the drive to sanction disabled people too ill to work spoke to the birth of a wider narrative of suspicion around disability benefit claimants, actively propagated by large sections of the media and the political class.
The headlines may fade but the misery doesn’t. In fact, it’s increasing. Early signs of the roll out of universal credit – the “all in one” benefit system – suggest the new benefit is adopting a particularly pernicious sanctioning culture. This month’s same government figures show the number of sanctions on people on UC are at an all-time monthly high, and since its launch in 2015, more than 100,000 UC claimants have been penalised. Meanwhile, with so many families facing sanctions and benefit delays, the Trussell Trust reported a record number of its food banks running out of food this summer.
Social policy reform based on the premise of removing the money people need in order to live is always shameful. But to do this to disabled people – who are receiving benefits because they are not well enough to work – is a stain on the national conscience. Theresa May and her ministers, by choosing to continue the heightened sanction regime, are as complicit as their predecessors who launched it. Five years on, the government is still starving disabled people. That this is now largely occurring under the radar makes it all the more disturbing.
Ministers have spent almost £40m in an “appalling” attempt to stop sick and disabled people receiving the financial help they are entitled to, The Independent can reveal.
Freedom of Information requests have exposed how taxpayers’ money has been spent on futile legal battles to prevent vulnerable people receiving help.
The hit to the public purse could also be far higher than the new data suggests because it is still unclear how much more the state spends running courts where sanctions are challenged.
The vast majority of appeals were lost by the Government last year, making the expense appear unnecessary. Early indications now show the problem is becoming even worse in 2017, with a 77 per cent rise in money spent trying to stop people from getting Employment and Support Allowance (ESA) payments.
Critics claim the situation has arisen because fitness to work assessments are deeply flawed, leading to incorrect decisions which need to be fought.
Senior Labour MP Frank Field, who worked as David Cameron’s poverty tsar, said: “What’s appalling is that the [Government] is prepared to spend £39m of taxpayers’ money against people who are desperately fighting off destitution.”
New figures show that in 2016 the Government spent £22m processing claimants’ initial appeals against sanctions – a stage most people must pass through before they reach a tribunal.
It emerged earlier this year that government officials are given targets to reject four out of five initial appeals – known as mandatory reconsiderations – for some disability benefits.
Further data obtained by The Independent under Freedom of Information law shows the Government then spent a further £17m fighting cases in the courts that were not settled at the initial appeal stage, bringing the total appeals process cost to £39m last year.
In the same period the Government lost 62 per cent of the tribunal cases in which it was attempting to sanction a claimant’s ESA – which supports people when impairments prevent them working.
They also lost 65 per cent of the cases in the latter half of 2016, the most recent period for which figures are available, relating to the Personal Independence Payment (PIP), a longer-term benefit.
But the defeats suffered by government lawyers are not persuading ministers of the need to change tack, with the figures actually pointing to a more costly appeals process in 2017.
The Government spent £1,166,459 trying to take benefits from ESA claimants between January and March 2016, and £2,069,849 in the same period this year – a 77 per cent rise.
Meanwhile, the proportion of cases where judges found that claimants were too ill to work also increased. In the first three months of last year judges decided in favour of claimants in 58 per cent of cases.
That figure rose to 70 per cent in the same period this year, suggesting the Government is denying payments to more people who are genuinely unfit to work.
The costs that have been exposed so far only refer to those incurred by the Department for Work and Pensions (DWP) and do not include money spent by the Courts and Tribunals Service, which carry out the appeals.
Three-stage appeal process
1. Assessment
Both PIP and ESA claimants have to complete assessments after which the DWP determines whether an applicant will receive payments and what level of support they will get.
2. Mandatory reconsideration
If an applicant wants to challenge the decision made at their assessment they have to complete a mandatory reconsideration, in which the DWP will re-examine a claim.
3. Appeal
If the decision is not overturned at a mandatory reconsideration, a claimant can then take the DWP to an independent tribunal. There is usually both a doctor and a judge sitting on the panel who will reexamine the case.
Chair of the Commons Work and Pensions Committee Mr Field added: “We clearly need a new compact between the [Government] and claimants, otherwise this injustice will continue to act as a recruiting agent for food banks.”
Critics believe the Government’s system for assessing if people are eligible for benefits like ESA and PIP are at the root of the problem.
Currently assessments are contracted out to private firms Atos and Capita, which do not require employees performing the assessments to have relevant expertise in specific disabilities.
It has led to reports of cases where physiotherapists have assessed claimants with mental health problems.
One ex-civil servant who suffers from Parkinson’s told The Independent how he won his case to receive financial help through the appeals system only to be informed he will have to be reassessed next year – despite his illness being degenerative.
Jeffrey Sturt, 59, said his assessor was “hostile” and “spoke down” to him. The former civil servant said he thought “people would walk away from challenging decisions because they are aggressive”.
“Minimum overheads, maximum profits – that’s what they’re going for,” he added.
One woman who suffers up to 30 epileptic seizures a month, said the Government took her back to a tribunal twice after she won her appeal. Citizens Advice said it is seeing more cases such as this, where the DWP does not accept the judge’s decision.
During the period when she was waiting to hear the outcome, the 38-year-old woman’s illness became worse and the frequency of her fits increased due to stress. “You start panicking about it,” she said. “You think, ‘Have they forgotten about me?’”
She finally won her case after 18 months. She asked: “What was the point in that? How much money did they waste on me?”
In April it was reported that Atos and Capita had been paid £578m so far for assessing people for PIP since it launched in 2013. Their contracts were due to expire in December this year but have been extended to July 2019, according to the DWP.
Michelle Mitchell, chief executive at the MS Society, said: “These exorbitant costs point to a welfare system that clearly doesn’t make sense.
“We know that many people with MS aren’t getting accurate decisions the first time around.
“Being forced to go through the lengthy and stressful appeals process is a waste of time and money, and also harms people’s health.”
Ken Butler, who leads on benefits policy at Disability Rights UK, said inaccurate assessments too often denied disabled people justice until their independent tribunals.
“I think the problem is that things go wrong at the very start and then they’re hard to put right,” he said.
“If the assessments were better then you wouldn’t have the need for mandatory reconsiderations. The system now only functions really to put people off going any further – the whole process is quite lengthy and stressful.”
Chief executive of Citizens Advice Gillian Guy said: “Last year Citizens Advice helped people with almost 400,000 PIP issues, up 37 per cent on the previous 12 months.
Many come to us concerned that the outcome of their PIP assessment doesn’t accurately reflect the support needs they have because of their health issues.
The next steps can be time-consuming, distressing and even costly if people have to pay to gather additional evidence.”
Margaret Greenwood, shadow minister for employment and inequalities, said: “These figures are a clear demonstration that the current assessment process, which causes significant stress to ill and disabled people, is not fit for purpose.
“The flawed Tory assessments are a damning indictment of this Government’s cruel social security reforms and seven wasted years of austerity.
“In addition to putting unnecessary pressure on people who need support, these assessments have created waste and expense with thousands overturned in the courts.”
A DWP spokesperson responded to the new findings by highlighting the low number of overturns as a proportion of all decisions made since 2013.
They said just 3 per cent of PIP decisions and 4 per cent of ESA decisions made at initial assessment had been overturned in that period.
Yet changes to the system make comparisons difficult.
“In the majority of successful appeals, decisions are overturned because people have submitted more oral or written evidence,” they said.
People often assume that the lead singer of Culture Abuse is wasted. In fact he has cerebral palsy. “They think I’m fucked up no matter what,” says David Kelling, “so I’ll just act like I’m partying to make people more comfortable.”
Kelling’s disability affects his movement on the right side of his body – he walks with a limp and often finds it hard to get on and off stage. His five-piece band signed to Epitaph in June and have been in Europe since they supported Green Day in Hyde Park in July, at the personal request of lead singer Billie Joe Armstrong; this weekend they play the Reading and Leeds festivals.
We meet as they begin their UK tour – they are relying on friends for places to crash between shows. Lining up pints of Guinness, Kelling explains that cerebral palsy, a condition that reduces muscle strength and motor skills, “affects everything” in his life. People stare at him on the street, he learned to play the guitar with his fingers because he can’t hold a pick, and almost every venue he plays at has stairs that are difficult for him to navigate.
The band’s latest album, Peach, released last year, was about various issues in the band members’ lives. “Our rent kept going up, one of our friends died, there’s a drought in California, and my mum has a terminal heart condition. But our fans kept saying how positive it was,” says Kelling, smiling. Originally from San Francisco but now living in LA, he says it feels weird to be in Europe, “writing cute love songs” when the US is in political turmoil, but believes that as a band they offer hope. Last week’s tweet proclaiming “fuck Donald Trump” and “fuck racism” lays out their political stall.
So Busted, the band’s latest single, is seemingly about the pain of liking someone who doesn’t like you back, but Kelling, who says he’s still “getting over hating myself”, explains it’s also about his insecurities.
He wrote it when he started seeing his girlfriend. “She is the most beautiful woman I have ever seen, but I still question why she is with me, [because] I’ve never seen the kid with the disability get the girl,” he says. “I’d keep asking: ‘Are you sure? Is it just because the band’s doing good?’”
Kelling says he is happy to be an ambassador for disability. “There are female musicians, there are black musicians – almost everyone can find someone who is like them. But disabled people have no role models at all. There could be more, there should be more.”
While there are campaigns for gender-neutral public bathrooms, Kelling argues that there’s no equivalent for disabled facilities. “Five flights of stairs to get to a venue – how does someone in a wheelchair get up them? And who is talking about that?” he asks. “It never stopped me going to gigs when I was younger, but sometimes I’d trip and fall and feel like I didn’t want to be there anymore.”
Kelling writes all the band’s music, which he has previously described as “the Clash and the Ramones mixed with some Nirvana”, but says it took him until the age of 30 to be confident to go public with it. He now wants to fight the media narrative of “a normal human, then you have a disabled person” and show parents that “their kid can be a hero too”.
He is confident that he will be the only disabled frontman to perform at Reading and Leeds this weekend. “I was always afraid of singing,” he says. “But I feel like a freak anyway, so I may as well get up on stage in a dirty T-shirt, spit all over myself and just embrace it.”
“Can you really not talk?” and “have you ever tried to speak to see what would happen?” are just two questions put to the comedian with cerebral palsy by drunk people after gigs.
His many witty comebacks, including pretending he has a side-line as a satellite navigation system, are revealed in the second of our podcasts from the BBC Ouch storytelling night at this year’s Edinburgh Festival.
Also featured are Maura, an autistic woman with hair envy and “the social skills of a used teabag” – and Frank, who was rescued from a partial seizure by Al Pacino.
Rosemary Johnson is unable to move or speak but using sensors attached to her head can select notes from a screen for another violinist to play.
Her former colleague Alison Balfour-Paul, from Cardiff, brought the music to life along with an orchestra.
The resulting performance has been made into a short film.
The technology was developed in a joint project between Plymouth University and the Royal Hospital for Neuro-disability in London, where Ms Johnson lives.
Brain Computer Music Interfacing technology works with a user wearing a cap with electrodes which can read electric information from their brain.
The user can then select music from a screen with their eye movements. The music chosen is displayed on a screen in front of a partner musician who plays it in real time.
The university teamed up with the Royal Hospital and composer Prof Eduardo Miranda for the project involving Ms Johnson.
A promising classical musician, at age 22 Ms Johnson was fourth violin at the Welsh National Opera (WNO) orchestra in 1988 when she was in a car crash on her way to a gig in north Wales.
She had only been with the WNO for nine months when the accident happened.
Ms Balfour-Paul, who lives in Cardiff, was approached six weeks ago by a mutual friend who had stayed in touch with Ms Johnson, after no-one could be found to play with her.
She said: “I accepted because I was a colleague of Rosie 29 years ago. She was a lovely player with everything going for her. She was caught up in this terrible accident and it left her terribly brain-damaged.
“She was a very open, kind of happy, bubbly person, no great pride in what she was doing – she was just a natural.”
The music which the pair play together has been composed by Prof Miranda in advance. Ms Johnson is given a choice of four different notes and selects the one she wants on the screen in front of her, which then displays on Ms Balfour-Paul’s screen and she plays it in real time.
‘We could feel the joy’
Ms Balfour-Paul remained at the WNO after Ms Johnson’s accident and now works as a freelance musician.
She said of the technology: “I hope it goes somewhere. I hope it can help more people – that’s the whole point of such technology.”
Prof Miranda said of the project: “The first time we tried with Rosemary we were in tears. We could feel the joy coming from her at being able to make music.
“When I met Rosie for the first time, something clicked. It is very interesting working with her. Because she is a classically trained musician, I don’t have to ask her too many questions, through the technology we are almost instantly working in a realm of musical communication.
“Working with her is helping us to develop and shape this technology. It’s a wonderful blend of science and creativity.”
Disabled people and the over-50s are the two most under-represented minority groups in the broadcasting industry, according to a report.
Disabled people make up just 6.5% of on-screen staff and 5.5% of off-screen staff in television, even though 18% of the national population have a disability. Over-50s – who are 36% of the population – make up 24.2% of on-screen and 20.4% of off-screen workers.
The findings are in a provisional report by Diamond, a project set up in 2015 by the major broadcasters, including BBC, ITV, Channel 4, and Sky, to monitor diversity in the industry.
The project has generated significant controversy in the broadcasting industry because it does not break down the diversity of each organisation. Bectu, the trade union, and the Writers’ Guild of Great Britain threatened to boycott the report over the refusal to publish details about the broadcasters.
Just 24% of the individuals working in television who were asked to submit information to the survey did so. This is equivalent to almost 6,000 people. However, the quality of the data has been approved in an independent review by the National Centre for Social Research.
The report states that 21.5% of on-screen workers have a black, Asian or minority ethnic (BAME) background but this slumps to 10.1% for off-screen. This compares with 13% of the UK population with a BAME background.
The findings are likely to increase calls for Ofcom to set targets for the number of BBC off-screen workers with a BAME background. The media regulator is under growing pressure to take action over the issue.
Diamond shows that women take up 48.1% of on-screen roles and 54.6% of off-screen roles, when they make up 51% of the population. LGB people take up 13.2% of on-screen roles and 11.7% of off-screen, and are 6.4% of the UK population, while 0.8% of on-screen roles are fulfilled by transgender people, the same proportion they form of the population as a whole. No transgender off-screen workers were recorded.
Deborah Williams, chief executive of the organisation behind Diamond, the Creative Diversity Network, said: “Diamond has been, and still is a hugely complex project to deliver. We now have an operational and systematic approach to collecting meaningful data across the UK industry. Diamond was built to provide long term monitoring, and with less than a year’s worth of data, it would be premature to draw conclusions from it or set definitive benchmarks.
“However, Diamond represents a committed decision by leading UK broadcasters to deliver a change. Now we need every individual within the industry to support the project by entering their data when asked and we will have a real opportunity to take Diamond to the next level and bring about the ambitious change we all want.”
A deaf man was thrown out of a branch of Gourmet Burger Kitchen in front of shocked customers because he had his hearing dog with him.
Louise DeNew was eating with her partner at the restaurant in Wimbledon, south-west London, on Saturday afternoon when she was confronted with the “horrible, horrible sight”.
She said she saw a middle-aged deaf man and his wife being kicked out by the manager of the branch, as outraged patrons looked on.
Ms DeNew added that although the small dog, believed to be a cocker spaniel, wore an assistance dog harness and had an ID card on its lead, the manager ordered them to leave.
She told the Standard: “They came in after us and had been seated in the corner with the dog pretty much hidden under the table.
“It wasn’t in anyone way and most customers in there wouldn’t of seen it.
“My partner and I were most upset by the fact that the gentleman seemed to have speech difficulties and wasn’t able to make himself understood.
“He was waving the dogs lead with the Hearing Dog badge on it to show it was an assistance dog but the staff just ignored him.
“We felt that they used the gentleman’s disability against him really.
“It happened very quickly and the manager put his arms out and pretty much herded the chap out of the door.
“It was very upsetting to witness and we left soon after.
“My boyfriend did complain before we left, in fact he kicked off quite loudly that it shouldn’t happen in this day and age so I am fairly certain that other customers would of heard it too.”
She said she and her partner put a formal complaint to the manager who “just shrugged and arrogantly stated it was GBK policy”.
Alasdair Murdoch, CEO Gourmet Burger Kitchen, said in a statement “I was very disappointed to learn of the incident at the weekend that occurred in our Wimbledon restaurant.
“At GBK we firmly believe in equality and the treatment of these customers was unacceptable. This in no way reflects the values of the company and we are truly sorry for the upset that was caused. We have taken this matter very seriously.
“All our restaurants accept assistance dogs and we are taking immediate action to ensure this doesn’t happen again.
“We are reviewing all training and are re-communicating with all members of staff regarding our inclusive policy.
“In the meantime we have been in touch with the customer affected to apologise and have resolved the situation directly.
“Again, we would like to apologise sincerely if we have offended anyone through this matter.”
At last, readers, a Paralympian on Strictly! A disabled competitor on Strictly! Our editor has waited ages for this moment. She’ll be watching, and hoping Jonnie Peacock does very well in the competition. She’s thrilled!!!
TV personality Debbie McGee, singer Alexandra Burke and Paralympian Jonnie Peacock are the final contestants to be announced for Strictly Come Dancing.
Peacock has won two Paralympics sprinting gold medals and is the first celebrity hopeful to have a disability.
His appearance follows that of former Royal Marine and fellow amputee Cassidy Little, who took part in a “people’s” edition of Strictly in 2015 as well as that year’s Christmas show.
…
The 24-year-old had his right leg amputated below the knee after contracting meningitis as a child.
“The opportunity to be the first contestant with a disability to take part in Strictly’s main show was too good to turn down,” he said.
“I’ve got no previous dance history outside of the occasional ‘worm’ at a mate’s party and I know this will be a challenge and a new experience.
“I can’t wait to see what I can achieve and how far I can push myself.”
Awkward! This week’s podcast, the first of two recorded live in Scotland, is all about a badly timed dislocation, a wheelchair user who stunned a nun by walking and the depressed man who got too good at pretending to like people.
BBC Ouch recently took five listeners and two comedians to the Edinburgh Fringe Festival, where they told awkward tales relating to their disability or mental health difficulty to a live audience.
It happened to Abbi Brown, when she stunned a praying Parisian nun by getting up and walking away from her wheelchair.
Angela Clarke forgot to tell a masseuse that her bones regularly dislocate, with predictably humorous consequences.
Mark Granger’s social butterfly persona masks his depression and difficulty around people so well that even the briefest of interactions can give them the wrong impression – especially single ladies.
And awkward interactions with people won’t stop comedian Juliette Burton talking about her mental health and eating disorders at gigs.
Downing Street claimed that “no disability applicant will lose out as a result of the changes to personal independence payment (Pip)” but, in my experience, hardly a day has passed without hard evidence to the contrary. It’s heartbreaking.
Pip is a benefit that helps with the extra costs of living with a long-term health condition or disability for people aged between 16 and 64. It is gradually replacing the disability living allowance (DLA) but, for many, navigating the new assessment system is an ordeal. Benefit recipients and those acting on their behalf are struggling to ensure that claims are correct and being made in full.
Claiming Pip is time-consuming. The application form is a monstrous 40-page document that needs to be handwritten. And Pip is assessed using a completely different set of criteria to DLA. You now need to score a certain number of points in relation to 12 activities. These comprise 10 daily living activities – including preparing food, washing and bathing, managing toilet needs, dressing and making decisions about money – plus two mobility activities: planning and following a journey, and moving around.
The application usually also requires a face-to-face consultation with a health professional to confirm individual needs.
What I have found particularly hard, in my experience of assisting claimants, is the apparent lack of understanding or empathy from healthcare professionals and telephone representatives at Atos and Capita, the two private companies that carry out the assessments. For someone with a physical or mental health condition, for example, there are challenges involved in simply travelling to the assessment. A client who lives in Cardiff was asked to attend an assessment in Swansea, with no recognition that this could be difficult.
Claimants are also forced outside their comfort zone during the appointment. Often they are asked lots of personal questions, many of which they don’t fully understand because they have very little insight into their own health conditions. Someone with a mental health condition may present as very capable at an assessment but in reality needs a high level of support.
At one recent assessment, in a hot, cramped room in Croydon, I had to sit on an examination bed because there were no spare chairs. The heating was stuck on high, so the health assessor had an electric fan on the table. I asked how he could work in such conditions. When our 90-minute assessment drew to a close I overheard him complain to a colleague that he’d had no lunch break.
The following day a support worker came to me in tears after being turned away from an assessment with a client. She was terrified that the client might lose his benefit. He didn’t fully understand the situation and began to behave in a challenging way. We complained and the client eventually received compensation, but many of those affected have no access to professional support, either to help fill in the application form, go to an assessment or appeal an unfavourable decision.
With all this going on, it is tricky to reassure people – especially those with mental health issues – that their benefits are being properly dealt with, and even more of a challenge trying to explain why it takes so long for the government to process a claim. Sometimes, when a phone call is not enough to allay their concerns, I have to write to them as well, even if there’s nothing new to report.
While it’s easy to understand the role of benefits in ensuring basic conditions for living, people also rely on them to fund activities vital for their quality of life. Pip enables them to take up a hobby, travel to visit friends and relatives, or take part in unpaid voluntary work that can be a route into paid employment.
One recent decision under the new regime meant a man with an acquired brain injury lost his motability car. For him this meant a total loss of independence. Even going to the supermarket is now fraught with difficulty.
The new mobility guidelines make it harder in particular for people who experience psychological distress when they undertake a journey, perhaps as a result of phobias or anxiety, to have this taken into account as the basis for a claim.
The changes mean that those with learning disabilities, autism, schizophrenia, anxiety disorders, cognitive disorder due to a stroke, dementia, depressive disorders, post-traumatic stress disorder, phobias and OCD will all be affected. How can the government claim nobody will lose out?
Regard is offering advice and support to other providers struggling with the new process and its implications for individuals they support. Official government guidance for Pip can be found here.
The Department for Work and Pensions (DWP) has revealed the extent of punishments used against people on disability benefit Employment and Support Allowance.
ESA is slowly replacing the ageing Incapacity Benefit and is now paid to 2.4million people.
Between December 2012 and December 2016, 71,543 ESA claimants have been sanctioned – which normally involves stopping their benefits.
Just over half of those claimants (40,288) had their benefits sanctioned for less than four weeks and the average length of a sanction was 28 days.
But 5,739 suffered a sanction for 27 weeks or more.
Another 6,579 claimants were sanctioned for between 14 and 26 weeks, statistics published yesterday show.
Shadow Work and Pensions Secretary Debbie Abrahams said: “It is abhorrent to see the Tories sanction thousands of sick and disabled people for up to six months, depriving them of much needed financial support and causing them further stress.
“The figures confirm that disabled people are not receiving the proper support from Jobcentres to navigate the complex social security system.”
Sanctions are only made against ESA claimants deemed fit for “work-related activity”, not those in the more serious support group, a DWP official said.
ESA sanctions are made for a fixed period of one, two or four weeks.
But they are open-ended and carry on indefinitely if people are still unable or refuse to take part in ‘work-related activity’.
DWP officials insist this means no one will be sanctioned for six months if they play by the rules.
But campaigners argue assessments that deem people fit for work-related activity in the first place are flawed.
The vast majority of ESA sanctions – more than 90% since December 2015 – have been a punishment for people refusing to take part in that activity.
Meanwhile the rate paid to the work-related activity group has axed and made the same as Jobseekers’ Allowance – a cut of £30 a week.
Yesterday’s figures showed the number of people on Jobseekers’ Allowance or ESA being sanctioned is falling.
However the number of sanctions for people on Universal Credit, the all-in-one system that’s slowly being claimed by more and more people as it replaces the old benefits – hit an all-time monthly high of 9,119 in December 2016.
More than 100,000 Universal Credit claimants have now been sanctioned since August 2015, 2,313 of them for six months or more.
A DWP spokesman said: “Only a very small proportion of people on ESA are sanctioned every month – just 0.6%.
“ESA sanctions are designed to encourage people to fulfil their requirements, so they remain in place until someone re-engages with their work coach or employment support.
“It’s only fair to ask claimants to do their part and there is a well-established system of payments available for people who need support to meet their immediate and most essential needs.”
A programme of office closures and the implementation of a new “corporate centre hub strategy” will see the positions axed as early as February next year.
The Public and Commercial Services union, which represents civil servants, said under new protocols its period of consultation with the department had been limited to just 45 days, and that the plans were “unwelcome and unnecessary”.
General secretary Mark Serwotka said: “At a time when workloads are at record highs, DWP should be recruiting new staff, not forcing loyal and experienced staff onto the dole.
“PCS will continue to campaign against these redundancies using every means at our disposal.
“This is a dreadful announcement from the DWP. The government are forcing through unprecedented cuts on the civil service. We shall intensify our campaign against office closures and job cuts.”
At-risk staff will be offered the chance to put themselves forward for voluntary redundancy in the first instance.
The department, headed by secretary of state David Gauke, will offer redundancy packages based on the terms of the 2010 civil service compensation scheme, after a new, less generous 2016 scheme was ruled unlawful following a court battle.
Theresa May has previously drawn criticism from some senior civil service officials, who warned the PM would need to “change her management style” if she is to steer her minority government successfully through Brexit.
The governing body of English cricket has been accused of discriminating against colour blind people after introducing a pink ball for the first day-night Test match on Thursday.
Colour Blind Awareness has written to the England and Wales Cricket Board (ECB) demanding it review the use of the ball which it says is very difficult to spot for people with the condition.
In a strongly worded letter seen by The Telegraph, Kathryn Albany-Ward, the founder of the organisation, warned that the ECB could be even failing colour blind cricketers under equality employment legislation because the visual impairment is seen as disability.
“In the UK there are approximately three million people with colour blindness,” the letter says, adding that that equates to possibly one colour blind cricketer in each team, 1,125 spectators at this week’s England vs West Indies Test at Edgbaston, and thousands watching the match on television around the world.
“So, it would be extremely difficult to argue that it is reasonable to use a pink ball when so many people are potentially adversely affected,” it continues. “This is an issue that urgently needs to be investigated in more detail, including adequate and detailed testing of the ball in different light conditions both by players and spectators with normal colour vision and those with different types and severities of colour blindness.”
The letter concludes: “I would like to know what consideration was given to the use of a pink ball. More importantly, I would ask you to review the use of the ball to ensure that steps are taken to ensure that colour blind people, whether players or fans, can also enjoy the sport.
“I would expect broadcasters and sponsors may wish to seek reassurance from you that fans are not turning away from the game due to an inability to follow the ball as this could have a negative effect upon their receipts.
“Colour blind people watching the match had contacted her to say that they were struggling to see the ball.
Recently, Gary Ballance, the left-handed Yorkshire county batsman, said his colour blindness has meant he has struggled to see the pink ball in trials, although he recently said he found it easier to see after a modification.
Nearly three years ago, Chris Rogers, the Australian Test opener, was forced to withdraw from a day-night match when they were testing out the pink ball in Australia because he has the condition.
All of the England players were given eyesight tests to ensure the pink ball would not be a problem for them.
One in 12 men and one in 200 women are colour blind. Professor Andrew Stockman, honorary consultant at Moorfields Eye Hospital and professor at UCL Institute of Ophthalmology, said: “Pink is not the best colour choice for colour deficients. If the pink ball is of the same brightness as the green or brown grass or a grey background, people with red-green colour deficiencies will have much more difficulty in discriminating it than people with colour vision.”
Cricket fan, Dave Dunbar, who is colour blind, said he struggled to see the ball when watching the match on television.
“It was not easy to see at all,” Mr Dunbar, 51, from Worcestershire, said. “When it was on the field I had to really focus. Even then it was not easy to pick out.
“In the air it was very difficult to see. I often had to rely on the direction the fielders were running towards to try to spot the ball. At the moment, the ball is new and quite shiny, which helps. But, when the shine has worn off during the Test it could be much worse. When the floodlights come on at sunset I suspect it will be even harder to see.”
A number of people also complained that the pink ball was difficult for normal sighted people to spot when it appeared against a pink background used on an advertising hoarding for life insurance.
Mrs Albany-Ward said: “There have been a lot of colour blind people contacting us complaining that they can’t see the pink ball. There simply isn’t contrast between the colour of the ball and the background.”
An ECB spokesman said: “Staging this match fits within one of our core aims to continue to broaden the opportunities for people to watch and enjoy cricket. We have looked to test the ball thoroughly beforehand. As with any new activity we will seek feedback after the match from players, coaches, officials and fans on their experiences after the game.”
Same Difference was invited by Inclusion London, who are supporting Luke Davey in his case against Oxfordshire County Council, to cover part of today’s tribunal hearing in the case, at the Royal Courts of Justice.
Luke Davey, 40, has quadriplegic Cerebral Palsy. He is currently fighting to get back the care package he has had throughout his adult life, which has been cut almost in half after the closure of the Independent Living Fund. The care package he is used to allowed him to live independently with the support of Personal Assistants/carers who he has known and liked for 20 years.
We heard the arguments presented by Luke Davey’s solicitor in support of his case.
Mr Davey, the Court was told, tried to accommodate the cuts to his care package but these have negatively affected his wellbeing. The Court was asked to consider the consequences, for Me Davey, of cutting his care package.
The cut meant that Mr Davey only had care for 18 hours a day, rather than 24. This was because he was found not to need ‘waking night’ care.
For Mr Davey, the cut meant that he had to pay less to his carers than he had been paying, and they had been used to being paid. Mr Davey’s team of carers threatened to leave their jobs until his mother topped up their pay, which allowed him to afford 20 hours of care daily rather than 18.
The cut affected Mr Davey’s personal care, particularly his toileting needs. It also affected his social life as he needs support in the community.
Mr Davey’s is the first case under the Care Act to reach the Court of Appeal. The Act was heavily referenced and mentioned in the arguments. The important point was made that under the Care Act, two things must be considered when providing care, for the well being of the adult receiving care. These are the location of the care- the community or a residential care setting- and the identity of the care team.
The Care Act requires social workers to consider the future well being of an adult receiving care under care plans. When the case was heard at the High Court at the end of 2016, the Judge, Mr Justice Morris, highlighted the Care Act as a major Act in this area. He recognised that it is formal and prescriptive about care plans.
The solicitor argued, however, that the Judge didn’t highlight the importance of involving the adult who needs care in their care planning. The core purpose of care plans, the Court heard, is to allow the adult needing care to achieve outcomes relevant to them.
The importance of considering how, where and by who care is provided was highlighted for the Court. The solicitor made the point that the individual needing care is best placed to judge these. The importance, for the individual, of enjoying social care was also highlighted.
Local authorities, the Court heard, must decide if an individual has social care needs and what these are. A needs assessment must include ways to try to achieve outcomes important to the individual but there is no duty to achieve these outcomes.
Needs are defined as the inability to achieve an outcome because of physical or mental impairments. An individual has a need if achieving an outcome would take them too long because of an impairment, or if an impairment would leave the individual unable to achieve the outcome without harming themselves or someone else.
Local authorities cannot ignore needs that are already being met by volunteers when carrying out assessments. When a local authority is satisfied there are needs they must determine whether these meet eligibility criteria to be met by the local authority.
Mr Davey’s Local Authority says he does not have needs, but he does.
The Care Act recognises the difference between identifying and meeting needs.
The Care Act also tries to reflect the individuality behind the phrase ‘significant impact on well being.’ What is significant to one person may not be to another.
Under the Care Act, the Local Authority must prepare a Care and Support Plan, tell the adult which if any needs are going to be met and help the adult decide how needs are going to be met. The Local Authority must take reasonable steps to involve the adult in the way needs are going to be met.
The Care and Support Plan must include the personal budget for the adult concerned including how much the adult is required to contribute.
The Local Authority should refrain from any action that would restrict choice or affect flexibility.
Mr Davey’s case is about ensuring that he can keep his current care team, because that is the outcome he wants.
The individual must know the amount they will receive as a Personal Budget and be confident that this amount will meet all their needs. Using Direct Payments is not a reason to be less clear about how Personal Budgets will meet needs.
The Court was presented with an assessment carried out on Mr Davey in January 2015 which found that the most important thing in his life was that the same team of carers should continue to care for him. This assessment found that Mr Davey is reliant on his family and his team of carers for emotional support. It also found that continuing with the same carers would benefit his mental health and emotional well being.
The decision to reduce Mr Davey’s care package by 42% was made by a panel in February 2015.
Mr Davey has told his Local Authority that he doesn’t want live in care, even if it is provided by his mother, because he doesn’t want to make his team of carers redundant.
An Occupational Therapist’s assessment found that Mr Davey had become too dependent on carers being with him all the time. The OT addressed his anxiety about being at home on his own by cutting his care. However Mr Davey was allowed to organise the hours he spent without care each day himself.
Mr Davey was used to paying his carers double time on Bank Holidays and weekends. The Local Authority made a payment which allowed him to pay double time on Bank Holidays last year.
However the Local Authority set significantly lower rates of pay than Mr Davey was paying before. Mr Davey agreed some of the changes, but not all of them. In particular he did not agree to stop paying double time at weekends.
Mr Davey’s relationship with his team of carers was very significant to him and keeping it was the most important outcome to him. He was very worried that the lower rates of pay would break up the team.
However, the Court heard that, at the High Court, the Local Authority said the breakup of his team would be positive because it would allow Mr Davey to reduce dependence on specific carers, and therefore that it would be the best outcome. They also said that the breakup of the team would not pose any risk to Mr Davey’s well being.
At the High Court, the Local Authority said there was insufficient evidence that Mr Davey’s current team of carers would break up as a result of the cut, when, Mr Davey’s solicitor told the Court today, there was a lot of evidence for this.
Mr Davey’s solicitor said that waiting until the current care team broke up and Mr Davey was experiencing the consequences goes against the need for planning under the Care Act.
Mr Davey consistently says that he is happy with his team, and he finds the Local Authority’s suggestion that this is wrong difficult.
At the High Court, the Local Authority said Mr Davey had become less independent as an individual and blamed the care team for this. They said this because Mr Davey has finished college and stopped voluntary work.
At the High Court, the Local Authority gave evidence that other disabled people in Oxfordshire were easily able to recruit new carers, but Oxfordshire is large and Mr Davey lives in a remote part of it.
The Local Authority said that Mr Davey had previously recruited at minimum wage. This is true, but only for some of the time and never for weekends, as the new budget would require.
The cut has a social impact on Mr Davey because it means that he cannot choose what he does each day as his care hours are broken up. He can no longer take occasional day trips or, in fact, do anything that takes longer than three hours. The social activities he is still able to do are not enough.
Same Difference will follow this case closely and update readers on the final ruling as soon as possible.
Same Difference was offline this morning. We were working with Inclusion London who are supporting Luke Davey, a man with Cerebral Palsy, in his court case against Oxfordshire County Council who have cut his care package.
Here are some photos from the vigil we held outside the court this morning. A writeup of the hearing will follow.
And disabled activists had to argue to even get this "Royal Courts" entrance opened. One man nearly knocked over by a cyclist. Outrageous. pic.twitter.com/OsMVVild8D
Liz Carr is a respected friend of our editor. We wish her well in a full and fast recovery from this terrible, shocking incident.
Liz Carr, the Silent Witness star, was been stabbed in the head by an attacker armed with two pairs of scissors.
The actress, who is disabled and uses a wheelchair, was targeted by a man who she later joked was like Edward Scissorhands while her carer tried to defend her.
Ms Carr, who plays scientist Clarissa Mullery in the BBC crime drama, was reportedly lunged at by a man as she crossed a road near Euston station in central London.
She is recovering from a slash wound following the apparently random attack, while her carer was also taken to hospital.
A friend of Ms Carr told The Sun the attack last week was a “terrifying experience” for the actress.
“There was blood everywhere, but she was very lucky that the wound grazed her head and she was not more seriously injured,” the friend said.
“Typically, Liz is putting a brave face on it – joking that it was like being attacked by Edward Scissorhands. She has no idea who he was and has never seen him before.”
A suspect in his 20s was arrested by police on suspicion of causing grievous bodily harm and taken into custody at a north London police station.
Scotland Yard said the man has since been detained under the Mental Health Act.
Emilia Fox, Ms Carr’s Silent Witness co-star, sent a message of support on Twitter two days after the attack.
In response to a fan posting a photo of the pair, Ms Fox said: “Big love to @thelizcarr, one of the most phenomenal women alive, thank goodness!xx”
Ms Carr replied: “Thank you for all the love today and always xxx”
Suzy Bennett, an actress friend of Ms Carr, also sent a message of good wishes on Twitter, to which Ms Carr responded: “All good 😉 x.”
AMetropolitan Police spokesman said: “Officers were called to Euston Road at 8.21pm on Thursday August 10 to reports of a man attacking two women with scissors.
“The two women were taken to hospital suffering minor cuts and subsequently discharged.”
Ms Carr suffers from arthrogryposis multiplex congenital, a rare genetic condition, and has been in a wheelchair since she was seven.
Sylvia Mac has spent most of her life trying to conceal the extensive scars which cover her body – the legacy of a childhood accident. Here she explains why, at the age of 48, she decided it was time to stop hiding and come out into the open.
There’s not actually any part of my body apart from my face that is normal.
My burns start from the top of my neck all the way down to the top of my bottom, and then around the front of my stomach and down my left leg. And then on the rest of my body I’ve got lots of little pinprick holes all down my arms and my legs from where they took skin.
I was very badly burned when I was three years old, suffering third- and fourth-degree burns.
My mum was boiling water in saucepans for our bath. She would pour the water into bowls and she put the bowls on the bathroom floor.
We were just playing around, me and my siblings, and I ran into the bathroom and shut the door. We were told not to go in there. I went in there and my sister pushed the door, and that’s when I fell backwards into the bowl of boiling water, causing very bad burns.
There was pandemonium in the house, screaming… I went into shock and was having fits. Then the ambulance arrived.
They gathered my family together and told them that I wasn’t going to make it through the night.
They baptised me and I had my last rites.
My first recollection was lying in the hospital bed wrapped in bandages from underneath my arms down to my hips. I remember always being in pain.
Whenever I visited the hospital I would have to undress from top to toe and stand on a bed and turn around so that they could inspect my back and the rest of my body, with all the student nurses looking at me. I had nightmares over it.
I’ve probably had hundreds of operations now.
When I was growing up a lot of people used to tell my mum, “Oh, she’s beautiful, she’s pretty.”
But in my head I always thought, “Why are they saying, ‘You’re pretty’? I’m not. Underneath my clothes I’m burned.”
I always felt ugly, so it’s affected me mentally as well as physically.
Children would call me different names like “witch” and “snakeskin”, and they were really nasty. I was told that I would never have boyfriends, never get married, never have children. Showing my back was always going to be a negative thing.
I loved swimming – once I was in the water I was in a different world, it was great – but I was terrified about people seeing my body. When everybody got out of the water I’d wait until they went to change and be the last one to sneak out.
There was a particular teacher at secondary school, our PE teacher, who decided that we were all going to have showers at the end of the lesson. We all had to queue up with our towels around us.
As I got to her, I was pleading with her, “Please, please, I can’t shower, there’s no way I can shower,” and she just pulled off my towel and pushed me into the shower. Having everybody look at me was awful, I just felt like everyone was laughing at me.
Eventually my dad wanted me to join the local swimming club. I don’t know if he did it in the hope that it would help me open up and meet people, but actually it was quite damaging.
I never actually won a race just because of the thought of everybody having to look at me if I did come first.
Having my picture taken was always something I avoided – even school photos – so it’s difficult to find pictures of me as a youngster. And sometimes I’d get a bit paranoid that people might be taking photos of me even if they weren’t.
I couldn’t go through many things in life, I couldn’t sit exams, I couldn’t go to job interviews because I just had no confidence and had low self-esteem, and I didn’t realise why I was so down and so depressed.
It was almost like I was encased in a shell and I couldn’t get out, and people never really listened to me.
In my teenage years there were times when I thought, “I’m going to step in front of that bus and just finish my life.”
I can’t look back now and say it was my mother’s fault. But there were times when I took it out on her.
I got to a point where I was attacking everybody around me and it was the only way that I could deal with my emotions. I’d literally call people up, like my sisters, and be really nasty to them, a really vile, nasty, horrible person.
Relationships were very difficult. When I used to go out clubbing with my friends, I’d dance with guys and they’d be rubbing their hands up my back and they’d whisper in my ear, “Oh, that’s really nice, you’re wearing a basque or a corset.”
They could feel the burns, they were like ropes – they still are today. And I’d just walk away.
Eventually I met a really lovely guy and we just got talking all night. I explained to him about my burns because I felt so comfortable, he was a really good friend. He said he didn’t have any problem with it, and that I was still beautiful. I was in love straight away because he accepted me. It just felt right. I’ve gone on to have three children with him and a grandchild.
Last year I was on holiday with my mum. We were at the pool, it was quite busy and the sun beds were close together. I had a bikini on. We were sitting down and I noticed the guy behind us pointing his phone towards me so I decided to get up. He moved his phone to follow me and every time I moved he followed me with his phone, so I knew then he was recording me.
It was really upsetting me so I said to my mum, “This is horrible, I want to get out of here.”
So she said, “Let’s go to the beach.”
I saw my mum sitting on the sun lounger and she had her head down, and I remember just seeing her so sad, it was quite upsetting actually. I realised that what I’ve gone through has affected her as well.
I had always noticed her looking at my burns. I wanted to say something to her – to say, “It’s OK, I’m OK.”
At that moment something just clicked in my brain and I decided that I was going to draw a line and make her happy. I took my dress off and I walked down to the edge. People were looking at me and I looked at my mum and I smiled, and I went, “Mum! Look! Look at me!”
And she started to smile. I put my hands on my hips and I started to pose on the water’s edge and she was so happy.
I went over to her and I said, “From now on I’m going to let people take pictures, and every time they do I’m going to smile and I’m going to pose.”
I think that moment on the beach was just a turning point where I realised that no counselling, nothing on Google, was going to help me. It was time for me to help myself.
I went out and bought a swimming costume – it had a big hole in the back – and then I set up my swimming classes at my local pool in Highbury, north London. I invite people with disfigurements to come and swim. When I’m in the water and I’m swimming I just feel at peace, I feel calm, and I can think of lots of wonderful things.
I also started a website, Love Disfigure, and became active on social media to raise awareness and show support for those living with a disfigurement. It may comfort people to know there are others out there going through the same thing.
I talk to a lot of people that have been burned, too. There are youngsters who want to kill themselves when they’ve just been burned, and I try to tell them, “Look, I’ve got all the way through my life and you can do this too.”
It’s been such a long journey. It’s like taking off a coat and saying, “This is me now, and I don’t care what people think.” I’ve noticed a big change in my life and I’ve been able to accept the way I look.
My message to people with disfigurement is to just go for it, do whatever you want to do in life. Don’t let anything stop you or stand in your way.
The west London hub is one of four airports where the Civil Aviation Authority judged the service for wheelchair users and other disabled passengers to be poor . The others were Manchester, East Midlands and Exeter.
A survey of almost 1,200 passengers who have used Heathrow’s assistance service found that 62% rated it as poor or very poor.
The CAA recorded instances of passengers not being met on board arriving aircraft and not being treated with dignity and respect. On some occasions passengers were encouraged to make their own way through the airport because of a lack of staff or equipment.
The CAA’s consumer enforcement manager, James Fremantle, said: “There have been a number of occasions where people have had to wait one to two hours on arrival at the airport. Our view is … disabled passengers shouldn’t wait any longer than other passengers.”
More than a million passengers requiring special assistance travel through Heathrow each year – more than any other European airport. Its assistance service is provided by the US-based firm OmniServ.
The executive director of the Equality and Human Rights Commission, Melanie Field, said: “For disabled passengers to be treated as second-class citizens and having to wait hours to leave a plane is not only bad service, it is discriminatory.
“Being able to travel independently and safely is one of the biggest concerns for disabled people. Our airports are often the first impression travellers have of our country. They must improve their service.”
The CAA found that some disabled travellers using East Midlands airport had suffered unacceptably long waiting times on arrival, particularly last summer. Manchester and Exeter were found to have failed to carry out consultations with disability organisations.
All four airports have pledged to make improvements, and the CAA said it would monitor them closely to ensure improvements were made in the coming months.
The report found that 20 airports provided good assistance, and six were described as very good.
The CAA’s director of consumers and markets, Richard Moriarty, said: “Our surveys, along with the airports’ own studies, have shown high levels of satisfaction among disabled passengers and we have seen some examples of excellent service where assistance is well organised and delays are minimal.
“However, East Midlands, Exeter, Heathrow and Manchester have fallen short of our expectations and we have secured commitments from them to make improvements.”
The transport secretary, Chris Grayling, said he was encouraged that “the overwhelming majority” of UK airports provided a good service for disabled passengers, and he was determined to push the aviation industry to do more.
Heathrow said in a statement that it was “extremely disappointed” with the CAA’s findings, apologised to customers affected and pledged to address the issues raised.
The said it would amend its contract for providing passenger assistance to ensure waiting times were reduced.
A spokeswoman for OmniServ said the company was “investing significant sums in staff training” and would “continue evaluating our performance … to provide the best service to all of Heathrow’s passengers”.
More than 3 million journeys were made by passengers requesting extra help in the UK last year, up 66% on the figure for 2010.
The following true tale is the introduction into what will be a series of posts regarding a seeming miscarriage of justice and potential disability discrimination; names have been changed to protect the identities of these involved. The purpose of this post is to help the family concerned achieve real justice; please share as widely as possible.
Alison is a single parent of14 year old Adam, both live with various diagnosed and pending diagnosis health disorders including Fibromyalgia and Elhers Danos; Alison is also Autistic and symptoms suggest Adam is as well.
Due to Adams health, he found it difficult to cope with school from the beginning and despite special educational needs intervention, including one to one lessons he struggled experiencing bullying which resulted in him developing depression. These experiences became worse during Adams transition from junior to senior school, so much so that in 2015, Alison began to home educate…
When Parmi Dheensa’s son Callum kissed a classmate on the cheek not long after starting at a special needs primary school, a teacher asked his mother if this was “culturally appropriate”. Dheensa said that as long as the classmate was happy, nothing in her son’s Punjabi heritage forbade such displays of affection.
It is just one example over many years of professionals leaping to incorrect conclusions based on the ethnicity of her severely learning disabled son, who is now 19, says Dheensa. They also assume she does not work and is supported by an extended family when in fact she is a lone parent who works full-time. Dheensa, 43, was once told that her son’s support – he lives at home and is at a special school – was “better than it would be in India”. Fair point maybe, she says, but irrelevant to a British-born, Midlands-based family.
This does not constitute blatant discrimination but instead reflects the insidious “bias culture” facing black, Asian and minority ethnic people (BAME) with learning disabilities and their families, says Dheensa. They face double discrimination – the disadvantages experienced by all learning disabled people (including health inequalities or austerity), plus a lack of cultural awareness and language barriers. There is often stigma about learning disability in their own communities, too.
Dheensa’s experiences led her to found BAME support charity Include Me Too 15 years ago, after working for the voluntary sector and council in Wolverhampton in various BAME and disability support roles. “Parents aren’t aware of what their rights and entitlements are, they don’t have the confidence to challenge,” she says.
Include Me Too works with 1,500 families a year, and has launched a campaign for the government to review its equality duties in relation to special needs education and support for BAME communities. The charity wants a review of BAME representation in government decision-making (existing involvement is, says Dheensa, “tokenistic”) and a new disability and equality strategy to ensure families get better support. The criticism is that professionals do not fully involve parents in reviews of the support they require, or in drawing up education, health and care plans, and parents or carer forums are predominately white British.
The campaign is timely given that support for the BAME charity and community sector is being decimated by funding cuts and the Equality and Human Rights Commission (EHRC) has warned of the UK’s “deep-rooted inequalities”. There is no firm figure for the BAME learning disabled population. Race Equality Foundation research refers to 60,000 people, but this is based on a 2007 figure. More recent research from the Equalities National Council and Scope suggests the number of disabled (but not specifically learning disabled) BAME people totals one million. According to Lancaster University’s Centre for Disability Research, between 2011 and 2030, 25% of new entrants to adult social care with learning disabilities will belong to minority ethnic communities.
Assumptions persist that first-cousin marriage in South Asian communities causes disabilities, or communities do not want external help. Jabir Butt, deputy chief executive of the Race Equality Foundation, acknowledges that the “very toxic debate about inter-cousin marriages still plays a part in many people’s perceptions of these issues, and says “until we break away from that, we’re not going to get progress.”
Aniisa Farah, originally from Somalia, is a single parent from the south of England, with an autistic daughter, 10, and son, six, both at a special school. Farah launched a group, Somali Autism Awareness, after noticing a gap in support. She says her determination is interpreted as confrontation: “Because I wear a hijab, they assume I’m uneducated. One teacher told me, when I complained I wasn’t happy with my daughter’s support or didn’t feel involved, ‘this is not Africa’.” Farah adds: “The professionals see anger and a stereotype. I’ve been told I’m ‘very aggressive’ and ‘abusive’, but what they don’t understand is that I’m not attacking them personally – I am standing up for my children. The attitude is ‘you should be grateful for what you’re getting’.”
BAME families also experience a lack of awareness within their communities, as Farah explains: “I didn’t know about autism before my daughter was diagnosed aged six; there’s no word for autism in Somali. Some people – including family and friends in the community – would call her ‘crazy girl’ … I have had to isolate myself from some people so my kids do not get labelled.”
Dheensa, who was once told by a member of her community that perhaps her son’s learning disability had something to do with “karma”, adds: “We don’t even have the language for disabilities. When we’re trying to explain to families certain conditions in many of our Asian community languages, we haven’t got the words that describe cerebral palsy, autism, or epilepsy, for example.”
Butt says that aside from tackling professional attitudes, more work needs to take place at community grassroots level: “It has to start at the beginning when people are first involved [with health and social care support], we’ve got to have support available that explains to parents and carers what that diagnosis actually means”.
Organisations such as Dheensa’s and Farah’s are proof that successful specialist support is possible. Include Me Too recently worked with the Asian mother of a 10-year-old with physical and learning disabilities to secure grants for waterproof bedding and play-therapy equipment. The charity also runs Callum’s Promise, a scheme to increase disabled children and young people’s access to activities and sports. Last week it helped launch an adaptable surfboard with Wales-based community interest company Surfability.
The National Autistic Society’s Tower Hamlets Autism Support has specialist interpreters, for example, and the work of Midland Mencap has encouraged people, particularly from diverse communities, to use services. But Dheensa is also concerned about the precarious situation of asylum seekers with support needs who are not eligible for statutory help: “Include Me Too saw a family with a disabled young person without any specialist equipment or resources – literally a bowl to use as a lavatory,” she says.
Successful initiatives, says Professor Chris Hatton, “are designed to be driven more by people than being imposed by systems: good support means establishing a relationship of trust and listening to people … There will be some patches of the country where it’s great, and bigger patches where it’s not. It’s much harder to get funding for such work. Statutory services are looking for ways to spend less.” Dheensa adds that small community-based charities struggle to compete for funding to run services because the special educational needs and disability support sector (SEND) is monopolised by big organisations: “It’s a closed shop … The government say ‘go for tenders’ [apply to run local services with government money], but it’s difficult to put in a tender with limited resources against big players who put in competitive bids.”
The Department for Education, which oversees special needs policies, did not respond to requests for a comment. A spokeswoman for the EHRC says: “We have called for government to review England’s code of practice for children with special educational needs and disabilities [guidance issued in 2014] within five years of it being implemented to evaluate whether it is effective – and we are looking at how we can use our legal powers to greater effect to support those who feel discriminated against by the education system.”
But Dheensa warns of “a huge crisis” as young people transition from children’s social services into adult social care where she says cultural support is totally inadequateIf residential care is offered miles away from family and the community, for example, it deprives adults of familiar places of worship and the support networks around it. Says Farah: “We need to educate parents about autism, we need more funding in our communities. We need to build up the confidence of parents and have better relationships between communities and social workers and local authorities”.
The BBC is launching a pioneering new training programme for disabled actors that will shine a light on experienced actors already working in the industry, as well as discover and develop the potential of up and coming talent.
The development programme, called ‘Class Act: a nationwide search and skill factory’, comes as part of the BBC’s ambition to support and raise the profile of disabled actors.
Participants will be tutored in audition and camera technique, acting and business skills, script and character work, as well as working with directors on scenes for their showreels.
Disabled actors are invited to apply for the intensive three day workshop, which will be followed by the opportunity to build their contacts and showcase their talents to professionals across the industry. The showcase event is designed to encourage all who work with the BBC to draw on the widest possible talent pool.
Shane Allen, Controller, BBC Comedy Commissioning, said:
“It is crucial that we have more disabled people represented in our comedy output and bring through new disabled performing talent. This is the most focused and practical way for us to unearth and nurture the talents out there who are looking for this career break.”
Piers Wenger, Controller of BBC Drama, said:
“This exciting new initiative will provide disabled actors with some of the finest training the BBC has to offer and give them the best possible chance to compete for opportunities. Successful participants will be exposed to a host of industry contacts and will work on creating a great showreel to boost their career.”
Alison Walsh, Pan-BBC Disability Lead, said:
“On screen portrayal of disability is increasing on the BBC but disabled actors are still struggling to find a place – especially in roles not written specifically as disabled. Although this scheme doesn’t guarantee work, it will provide training opportunities and exposure for new talent as well as established actors who have yet to have their ‘big break’. Crucially it will provide a wake-up call to drama creators that they need to work harder to consider disabled acting talent for all productions – not just those with a disability theme.”
To apply for the training programme, disabled actors are invited to submit a self-taped audition not exceeding two minutes in length. The training, run by ThinkBigger, will be held from 2nd to 4th October 2017.
One woman chose to “suffer on [her] own” through chemotherapy for fear of her family’s reaction, and questioned whether God was punishing her.
Experts said others were seeking help too late, causing preventable deaths.
In one case a woman sought treatment only when her breast was rotten. She later died as the cancer had spread.
‘Very dark days’
Pravina Patel, who told the BBC’s Victoria Derbyshire programme about her own experience, stumbled upon a lump in her breast when she was 36.
She grew up in a strict Indian community where even talking about the disease was considered shameful. When she was diagnosed, she decided to hide it.
“I just thought if people hear the fact that I’ve got cancer, they’re going to think it’s a death sentence,” she said.
She remembered worrying that people would say she had lived a “bad life” and God was punishing her for it.
Ms Patel continued to keep the disease a secret when seeking treatment, saying she felt “extremely lonely” during chemotherapy.
“I was going through chemo sessions on my own… I had some very dark days,” she explained.
Pooja Saini, the lead researcher at CLAHRC North-West Coast, a research arm of the NHS that looks into health inequalities, said her own review into the issue “really surprised” her.
“Some women went to the extent of not even having treatment because, if they went, people would know as they’d lose their hair,” she explained.
She added others “feared it might affect their children because no-one would want to marry them”.
It is difficult to say how widespread the problem was, because little information has been collected on ethnicity and mortality.
But in 2014, research from Bridgewater NHS found Asian women between 15 and 64 years old had a significantly reduced survival rate for breast cancer of three years.
Ms Saini said her research suggests the influence of men in the family and elders in the wider community may be contributing to the issue.
“If they didn’t think women should go for screening, then they didn’t go,” she said.
Cultural expectations
The stigma surrounding cancer in South Asian communities spans different forms of the disease.
Ms Patel said there was a reluctance for women to go for a smear test because they did not want to be “defiled” or be considered “no longer pure”.
She has now completed her chemotherapy and is in remission.
Ms Patel and her husband got divorced during her treatment – something she says was partly because of cultural expectations about how a wife should be.
Some experts are concerned that women are suffering unnecessarily.
South Asian women are more likely to be from poor, deprived backgrounds, meaning their levels of awareness of cancer are likely to be lower.
National screening statistics show people from ethnic minority communities do not go for screening as much as their white counterparts.
Madhu Agarwal, a cancer support manager who has worked in the field of cancer for more than 30 years, fears this is leading to South Asian women dying unnecessarily.
“Because of the ignorance of not presenting early, not examining the breasts… the disease has already spread [when they do seek help] and it’s very difficult to manage it with treatment.
“Then the mortality is high, so there is a stigma attached – that when you get cancer you’re going to die.”
She said one of her patients had come for treatment so late that her breast was “fungating” and “rotten”.
She recalled: “It was smelling so much that you couldn’t even sit next to it.”
The woman – who had young children – died because the cancer had by then spread to other parts of her body, Ms Agarwal explained.
The Victoria Derbyshire programme has heard several other accounts of the effects the stigma surrounding cancer can have.
Samina Hussain said one of her family told her to wear hijab to hide her cancer, saying “you can cover this up now”.
Iyna Butt said her aunt refused chemotherapy as she felt “God had given [cancer] to her”.
‘Help save women’
Ms Saini is now calling for more data on screening uptake by ethnicity to be recorded, so findings can be used to provide more tailored support to communities.
Public Health England’s screening director Anne Mackie said when Ms Saini’s research is published it will look to implement its suggestions.
“We’ve got every reason to believe that will help save women from [South] Asian backgrounds’ lives as well as others from deprived backgrounds,” she said.
Our editor is passionate about education, so we fully support this.
Seven members of the All Party Parliamentary Group (APPG) on Disability have written to the DWP Minister Damian Hinds to urge that all full-time disabled students who receive DLA or PIP be eligible to receive Universal Credit.
Universal Credit, which replaces means tested benefits such as Employment and Support Allowance (ESA) and Housing Benefit (HB) is being increasingly ‘rolled out’ to more UK areas in its ‘full service’ form.
Receipt of ESA and HB means that disabled students can top-up their student finance with ESA to pay for their extra disability related costs and attend colleges and universities away from their home.
However, this ability is denied to them under Universal Credit as it does not automatically treat them as having a “limited capability for work”.
The current situation creates a post code lottery where some disabled students can still claim ESA and HB but others can only claim and be refused Universal Credit.
“Only 16% of disabled people have a degree level qualification compared to 30% of non-disabled people.
Universal Credit will inevitably make this situation worse as it:
adds to the financial barrier to disabled people accessing higher education; and
bars disabled people from accessing residential college or other rented accommodation.
We would urge the Government to make the following simple addition to Schedule 8 (Circumstances in which a claimant is to be treated as having limited capability for work) of the Universal Credit Regulations 2013 so that this applies where:
“The claimant is undertaking a course of education and is entitled to a disability living allowance, armed forces independence payment or personal independence payment.”
Stop press
The DWP has confirmed to DR UK that only disabled students who receive DLA or PIP and have had their limited capability for work agreed by a work capability assessment are eligible for Universal Credit.
However, it has not been uncommon for ESA claimants to wait up to a year for a work capability assessment appointment.
If a disabled student is still being only ‘treated as having a limited capability for work’ as they have not yet attended a work capability assessment the DWP says that they cannot be awarded Universal Credit.
In addition, Article 4 of Universal Credit Commencement Orders mean, if such a disabled student does claim Universal Credit, not only will it be refused but their claim will also lead to ending of their ESA.
“The DWP’s belated confirmation that many existing disabled students being legitimately being paid ESA are barred from Universal Credit makes an unfair situation even worse.
Disabled students may have made their decisions on undertaking courses away from home partly on their ability claim housing benefit.
If their college or university is then included in a ‘full service’ Universal Credit area this may mean them abandoning a course before they even start it.”
The Department for Work and Pensions has been unlawfully stopping people going to tribunal to appeal against decisions to refuse them benefits, three senior judges have ruled.
The upper tribunal found it was wrong for the DWP to refuse claimants the right to appeal if they took more than a month to ask for a review of the benefit decision.
It comes just a week after a supreme court finding that the government was unlawfully charging fees of up to £1,200 for access to employment tribunals.
The DWP system was challenged by the Child Poverty Action Group and two claimants with serious mental health problems who were refused disability benefits and then failed to ask for an internal review within the one-month time limit.
They made late applications for an internal review, called “mandatory reconsideration”, of their benefit decisions, but the DWP initially refused to change the decision or let a tribunal consider whether that was correct.
The judges found: “The reality is that many claimants will be vulnerable for reasons including issues relating to their mental health or learning disabilities. It is obvious that there is a high risk that many of them with good claims on the merits will miss time limits.
“This risk has been exacerbated over recent years by changes in the scope of legal aid and local authority and advice sector provision, and hence the reduction in the numbers of welfare rights officers and others who are readily available to assist claimants with their benefits claims and appeals.”
They concluded: “We are concerned with the situation where a claimant sends the secretary of state a request for a mandatory reconsideration to which the secretary of state responds by stating that the application is late and does not meet the criteria for extending time. We have concluded that as a matter of statutory interpretation a claimant in such circumstances has a statutory right of appeal to the first-tier tribunal.”
The Child Poverty Action Group said the upper tribunal decision would protect the appeal rights of the hundreds of thousands of benefit claimants who each year seek to challenge refusal of benefit.
The case related to employment and support allowance (ESA), but affects all those who claim benefits from the DWP, although not tax credits through HM Revenue and Customs.
It comes after a freedom of information request revealed the DWP has a target to uphold 80% of its original benefit decisions after the internal “mandatory reconsideration” reviews.
About 12% of employment and support allowance (work capability assessment) decisions are overturned at mandatory reconsideration, but the figure rises to 59% of those that make it to the tribunal stage.
The government had argued that claimants had recourse to judicial review if their right to go to tribunal was refused, but the judges observed that out of 1,544,805 mandatory reconsideration decisions made by the government between 2013 and 2017, there had not been a single example of a claimant taking this legal path.
Carla Clarke, the legal officer for Child Poverty Action Group, said it was “not only a vindication for our two clients, but it stands to provide justice for significant numbers of families wrongly denied the financial help to which they are entitled”.
“This decision ensures that even if the DWP thinks there is no good reason for their delay, it cannot prevent such individuals pursuing an appeal before an independent tribunal. To have found otherwise would have been to uphold a system where the decision-maker also acts as arbiter of whether an individual could challenge their decision or not – a clear conflict of interest and an affront to justice,” Clarke said.
The Department of Work and Pensions said: “We have received the tribunal’s decision and are considering the judgment.”
With stories of running away to Skegness aged 14 and the culture-clash of going from a council estate to Cambridge University, it’s fair to say Allan Hennessy stole the show this month.
He’s that visually impaired Iraqi refugee whose recent BBC video went viral after he graduated with a first class law degree.
Also in the studio is autistic trumpeter Robyn Steward who sparked a lively debate on the language of disability.
And playwright Jackie Hagan recalls the weeks after her leg amputation when she had to use a food bank.
She was forced to leave a trail of elderflower water and custard creams behind her because the parcel was too heavy to carry home while she was using her crutches.
Jackie’s play, Cosmic Scallies, about disability, poverty and friendship, is at the Edinburgh Fringe this summer.
Barely a week after London proudly hosted disabled athletes from around the world, it’s emerged that our own government is failing to provide its disabled citizens with something as basic as a wheelchair.
A BuzzFeed News investigation into wheelchair provision on the NHS this week found almost a quarter of people referred by GPs to wheelchair services are not being given any equipment at all. It also uncovered an extreme “postcode lottery”: in some parts of the UK, disabled people are provided with the right chair, but in others, three-quarters of those referred are offered nothing by wheelchair services. On top of this, it confirmed there are huge delays in disabled people getting help: 96% of areas are missing their target to supply all wheelchairs within the 18 weeks guaranteed by the NHS constitution. That’s paraplegics stuck in bed as they wait for a wheelchair, and disabled children left using unsafe equipment.
This is a scandal that’s largely been hidden from the public eye. Unlike other health services, there’s long been a stark lack of transparency and accountability when it comes to wheelchairs on the NHS: there aren’t national eligibility criteria for receiving mobility equipment – which only encourages that postcode lottery – and until 2015 there was no centrally gathered data on wheelchair services across the country. Anecdotally, as public service cuts have deepened, disabled people are reporting that it is increasingly hard to access a wheelchair on the NHS.
Over the past year, readers have told me about how – rejected by NHS wheelchair services – they’ve incurred permanent injuries after being forced to buy a cheap chair off the internet, or become housebound because, with no way to afford a wheelchair, they physically can’t get outside. This is the definition of a nation’s hidden shame: disabled people literally trapped behind closed doors.
Press further into the story and you find that even when it appears disabled people are being helped, the system is often still leaving them stranded. Some clinical commissioning groups (CCGs) – the local GP-led services that determine the policy and budgets for wheelchairs – will only provide a basic wheelchair, rather than one that’s suitable and safe for an individual’s disability (when it comes to wheelchairs, one size does not fit all). Other CCGs offer vouchers towards a better chair, but many don’t, or will only do this for certain brands of chair.
This all adds up to thousands of families being expected to find anything between £2,000 and £25,000 themselves for a wheelchair. That would be impossible for most people, but it’s particularly grim to ask it of people with disabilities or ill health. Disabled people are more likely to be in poverty than the general population, and at the same time are already dealing with extortionate living costs (the disability charity Scope found in 2014 that disabled people pay on average £550 extra a month).
Last month, I reported how wheelchair users, rejected by the NHS and with no way to afford one themselves, are resorting to crowdfunding for a wheelchair; in essence, begging the public for help that the state won’t provide. This return to charity is creeping into wheelchair provision. When I applied to my local wheelchair services for help for an electric wheelchair last year, I was told that the waiting list was between three and five years to get one on the NHS. I could get a different one within a year to 18 months, apparently, but it wouldn’t be suitable for going outside. Vouchers weren’t even offered. Instead, I was given leaflets for local disability charities.
Being advised to go to charity, no matter how kindly, feels particularly disturbing if you’re disabled – a group historically forced to go “cap in hand” to survive – but it should worry anyone who believes in taxation and a comprehensive safety net. Whether one of the richest nations in the world can provide severely disabled people with a safe and suitable wheelchair goes to the very centre of the questions about the welfare state.
The response in some quarters is that the NHS is a finite resource – the implication being that there’s limited money to go around, and that, if we were to rank essential health needs, wheelchairs would not meet the criteria. But this is flawed on both counts. The idea that wheelchairs are a discretionary service points to a cultural prejudice around disability. It’s hard to imagine any other group being expected to exist without the healthcare that enables them to function as part of ordinary society – and it is exactly the same mentality that’s behind the vast cuts that are curtailing disabled people’s independence. Besides, to talk of what the NHS can “afford” for disabled people only supports the myth that public services struggle because of the individual rather than a government choosing not to sufficiently fund them.
As the evidence around the country’s dire wheelchair provision becomes clear, the pressure needs to mount on each local service to provide disabled people with the support they need. As we speak, there are countless families being turned down by the NHS for the most fundamental support. A system that fails to provide disabled citizens with a wheelchair is the antithesis of the welfare state; it is abandoning the very people most in need.
The report, commissioned by the Media, Diversity & Social Change Initiative (MDSC) at the University of Southern California’s Annenberg School for Communication and Journalism, analysed 900 popular films from the years 2007 to 2016 (excluding 2011, which was covered by a separate study). It found that there was little to no meaningful change in the representation of diverse groups in popular movie content, with “white, straight, able-bodied men remaining the norm on screen in film”.
Analysing the top 100 movies of 2016, the report found that only 31.4% of speaking characters were women, while non-white groups accounted for 29.1%. Of these, 13.6% were black and 5.7% were Asian. Hispanic people (3.1%) were particularly underrepresented with more than half of the 2016 films studied featuring no speaking characters who were Hispanic. Only 2.7% of speaking characters were depicted as having a disability. Meanwhile, 1.1% of speaking characters were gay, lesbian or bisexual, and no speaking character was identified as transgender. Only one film featured a gay protagonist: Oscar best-picture winner Moonlight.
The report also indicates major problems concerning intersectionality on screen, with nearly half of all the 100 top films of 2016 completely lacking black female speaking characters, while two-thirds or more had no Asian women and Hispanic women.
Behind the camera, the figures for women and ethnic minority groups were similarly low. Only 4.2% of directors in the 2016 films studied were female, and none of the titles were directed by black women. Of the 1,438 content creators (directors, writers, and producers) working on the top 100 films in 2016, only 17.8% were women.
“These are sustained and systemic problems. It is impossible to look at this data without concluding that much of the advocacy surrounding on-screen representation over the past few years has not been successful,” said Professor Stacy L Smith, who authored the study.
“These findings reveal that the erasure of different groups is still acceptable to some – we need look no further than film to see a vision of America that no longer exists. Film paints a distressing portrait of exclusion.”
The report suggests steps to improve diversity on screen, including targets for studios. It also says that top-level stars should consider inserting an equality clause into their contract stipulating that studios have to offer a more equitable process for auditioning on-screen talent and interviewing for behind-the-camera roles.
HMRC has announced that it will waive financial penalties but will continue to demand the minimum wage and up to 6 years back pay for carers sleeping overnight.
An employment appeal tribunal (EAT) ruling against Mencap ruled that carers sleeping overnight to provide safety and reassurance should be be paid the national minimum wage for all hours.
This does not apply to all carers who sleep overnight but the ruling may affect anyone employing a personal assistant (PA).
Sue Bott, Deputy CEO of Disability Rights UK, told the Disability News Service that she had heard from at least two disabled people who employ PAs and have been under investigation by HMRC. She said the tribunal appeal ruling could have “far-reaching consequences” if it was confirmed by the court of appeal.
“You can imagine the difficulty it will cause individual employers. I do think it’s right that PAs are paid the national minimum wage for each hour. In principle, I do think that’s right, but obviously I am concerned given the lack of resources in health and social care and how difficult it would be for individual employers to respond to a retrospective demand. People just don’t receive enough money in their personal budgets to be able to pay national minimum wage for every overnight hour.”
Disability Rights UK would like to hear from anyone employing PAs, or who knows of anyone employing PAs, who have received demands from HMRC for back pay for sleepovers. Contact feedback@disabilityrightsuk.org
HM Revenue and Customs (HMRC) have issued a statement which says it:
Re-affirms its expectation all employers pay workers according to the law, including the National Minimum Wage, which is explained in guidance entitled “Calculating the National Minimum Wage”
Will waive financial penalties faced by all employers found to have underpaid their workers for “sleep-in” shifts, when those shifts took place before 26 July 2017
Has adopted a policy of suspending HM Revenue and Customs enforcement activity concerning payment of “sleep-in” shifts by social care providers, which will apply until 2 October 2017
Will work with representatives of the social care sector, during the period of that suspension, to see how it might be possible to minimise any impact on provision of social care as a result of this situation
Any arrears must still be paid and employers are expected to comply with the EAT ruling.
“Employers must ascertain whether a worker is still subject to certain work- related responsibilities whilst asleep, to the extent that they could be deemed to be ‘working’.
A worker, who is found to be working, even though they are asleep, is entitled to the minimum wage for the entire time they are at work. Workers may be found to be ‘working’ whilst asleep if, for example, there is a statutory requirement for them to be present or they would face disciplinary action if they left the workplace. They would then be entitled to the minimum wage.
There can be situations, however, where a worker is only available for work and is permitted to sleep and suitable sleeping facilities are provided at the workplace. In those cases, the individual will not be ‘working’ and the minimum wage will not be payable. However, the individual must be paid the minimum wage for any time they are awake for the purpose of working.
Under these situations it will depend on the nature of the work-related obligations to which the worker is subject while they are asleep.”
Midnight Oil frontman Peter Garrett has led tributes on social media, calling Yunupingu “a truly great musician”.
“Very sad news. Too young, so much left to give. Heart goes out to family,” Garrett said on Twitter.
Yunupingu’s family asked media outlets not to use pictures of him after his death in accordance with indigenous traditions.
‘The Australian voice of a generation’
Yunupingu’s record label, Skinnyfish Music, said he was “one of the most important figures in Australian music history”.
“His debut album cemented him as the Australian voice of a generation, hitting triple platinum in Australia, silver in the UK and charting in multiple other countries across the globe,” the statement said.
The singer’s label also praised the artist for creating opportunities for young people in the Northern Territory.
“His legacy as a musician and community leader will continue as his life’s work continues its positive impact on Elcho Island, The Northern Territory, Australia and the world.”
The singer had ongoing liver and kidney issues for some time, which had forced him to cancel a European tour.
The musician, who sang in English and in his native Yolngu language, performed at the Queen’s Diamond Jubilee Concert in London in 2012.
Mark Neary’s recurring nightmare is that six months after his own death, son Steven who has autism and learning disabilities will end up in a residential unit similar to the one where he was detained in 2010.
Later that same year, a human rights court case ruled that Steven’s detention was unlawful. Nowadays he lives independently, with support painstakingly managed by dad, Mark.
It’s a tough thing to have to think about. Routine is vital for Steven, so Mark hopes that a comprehensive death plan document including everything from details on paying staff to instructions for making compilation tapes, will ensure Steven thrives after he’s gone.
URGENT – IMPORTANT Did you know… Always check with the assessment company (Maximus, Atos or Capita) if they’ve consulted any Healthcare Professionals (HCP’s) in relation to your claim/assessment. If they say they’ve phoned any HCP’s ask who they contacted and when then double check this with the professional concerned. Where possible, explain to any HCP who you mention in your claim form that they need to tell you if the DWP or associated agencies contact them. I did this recently and the Healthcare Professional had no recollection of any phone contact with the DWP or related businesses in relation to a claim or assessment for PIP. This raises doubts about whether or not the HCP was actually contacted. If they say they have contacted a HCP in relation to your claim/assessment ask for written confirmation before proceeding. If they refuse to confirm this in writing put in a complaint and inform the DWP about any possible delays in relation to processing your claim, attending an assessment or any home visits. You have the right to check any information/documentation they obtain before attending any assessment whether at home or at an assessment centre. Just explain you have concerns about the accuracy of information from HCP’s and want to confirm this before they include it in any assessments. Explain – Once confirmed the information from the HCP is accurate, up to date and correct you will contact them in writing to allow them to continue with your claim. If they refuse to provide this information ask why they are refusing and to put their answers in writing, then make a complaint to the company and inform your MP that misleading information may be used to produce an inaccurate report in relation to your claim / assessment. Assessments can be face to face at an assessment centre or a home visit or just based on paper alone with evidence or information from your claim form and any HCP’s you list in your form(s). REMEMBER – CAB AND OTHER ADVICE AGENCIES MAY NOT INFORM YOU OF THIS INFORMATION
New employment and support allowance (ESA) claimants subject to the Health and Work Conversation (HWC) should be aware that if they are asked to carry out a ‘My Values’ exercise then they are potentially being considered for a sanction.
Health and Work Conversation Following a Freedom of Information Act request, Benefits and Work has received a large bundle of documents relating to the HWC currently being rolled out to new ESA claimants across the country. We’ve published these documents in the ESA section of the members area.
Full roll out of the HWC is expected to happen by the Autumn.
The HWC is a compulsory interview which new ESA claimants will be obliged to take part in at around week four of their claim, long before there has been any decision as to whether they should be in the support group and thus not required to undertake work-related activities.
The DWP claim that the HWC is necessary because its staff do not not engage with ESA claimants until after their work capability assessment, which can take many months, but ‘People who have developed a health condition or disability are likely to be facing a stressful and challenging period in their lives’.
In the view of the DWP, their early intervention will ‘help claimants identify small steps they can take towards their goals’ and this ‘will build motivation and resilience and increase the likelihood of work-related activity and ultimately finding work’.
So, the DWP believe that the best way to help claimants deal with the stress of developing a health condition is to force them to attend an interview which can result in their benefits being sanctioned.
There is a list of claimants who are exempt from the HWC, including claimants who: are terminally ill; have a life threatening illness; are full time carers or where there would be a risk to themselves or others if they were obliged to attend a HWC.
The problem with health-related exemptions, however, is that it is likely to be a completely unqualified work coach who will have to realise that an exemption may apply and take action.
Claimants who fail to attend the HWC without good cause or fail, in the view of the work coach, to fully participate in the conversation can have their ESA sanctioned.
About Me Each new claimant will get a phone call from their work coach two days before their HWC. The work coach asks the claimant to turn up 10 minutes early for their interview in order to complete an ‘About Me’ questionnaire, which asks questions like:
What kinds of things do you like doing in your life and at work? For example, cooking, speaking to people, being outside.
How does your health affect your life and your ability to work? For example, you cannot sit for a long time, or you are nervous in some situations.
What help do you need to get back to work? Tell us how and what you want to do and if you need support.
The claimant’s ‘About Me’ answers are discussed with the work coach at the start of the HWC. Work coaches are told:
“Start the discussion by acknowledging the claimant’s health condition but then quickly move onto something positive they have mentioned, such as an activity they enjoy doing.”
My 4 Steps After the ‘About Me’ discussion, the claimant is required to undertake a ‘My 4 steps’ exercise.
In this they think about something they want to do, say how they would feel if they achieved it, think about the obstacles that are stopping them achieving what they want and then make a plan to get over the obstacles.
Clearly if the claimant is someone with a health condition that can only deteriorate, and which has already led to them having to stop work, this might be a rather distressing exercise.
My Values Some claimants will be asked to complete a ‘My values’ exercise before moving on to their ‘My 4 Steps’.
In this exercise they will be asked to think about ‘what they value in life beyond work and health’.
Suggestions include:
Being good at art.
Enjoying sports.
Following government or politics.
Relationships with friends or family.
Claimants are asked to spend 10 minutes on the ’My Values’ exercise and are assured that they don’t have to discuss their answers if they don’t want to.
The theory is that the exercise ‘helps people to feel more open to taking on challenges by placing those challenges in the broader context of other things that matter to them in their lives.’
Work coaches are told to use this exercise with claimants where, in the work coaches opinion:
‘The claimant is quite defensive – they really aren’t engaging with me.’
‘I think the claimant would benefit from spending some time thinking about what’s important to them.’
‘The claimant just doesn’t want to open up to me at all and have this conversation.’
Given that you can have your ESA sanctioned if the work coach considers that you have failed to participate in the HWC, you should be aware that being asked to do the ‘My Values’ exercise could be an indication that the work coach is considering a sanction unless you participate more fully.
Action plan Finally, the claimant is required to create a ‘Labour Market System Action Plan’.
This is a list of at least two or three actions the claimant can take ‘to move closer to goals that relate to work or health’. The actions are supposed to relate to ‘external obstacles’, such as training needs, housing, debt, health management or child care.
The action plan has to include :
1 Action (what you’re going to do).
2 Where you’re going to do it (for example “at home”).
3 When you’re going to do it (for example, “this Saturday”).
Examples of actions given to work coaches are:
“On Friday morning I will call at least two course providers and discuss doing partial study from home. I will do this at home.”
“I will call the number for Mind that my Work Coach gave me at 10am on Tuesday. I will do this at my mum’s place.”
Claimants should be told that the action plan itself is voluntary, they do not have to carry out any of the actions if they do not wish to.
However, the work coach is also expected to arrange a follow-up activity, which may be another interview or a phone call to discuss how the claimant has got on.
Clearly this will put considerable pressure on claimants to carry out the agreed actions, even if they have been clearly told that they are voluntary.
Reinventing the – square – wheel The HWC bears considerable resemblance to the work-focused health-related assessment (WFHRA) which was an interview which used to take place, in theory, immediately after a WCA.
The purpose of the WFHRA was to “assess the extent to which your capability for work may be improved by the taking of steps in relation to your physical or mental condition.”
The WFHRA was abandoned in July 2010 due to having achieved only “mixed results”.
We suspect the WHC will go the same way before many years have passed. However, many claimants may have suffered sanctions or undertaken steps that put their health at risk before that happens.
The roll out of PIP is running far behind schedule, the DWP have confirmed.
All existing DLA claimants should have been ‘invited’ to claim PIP by April of this year.
But a poster on the Rightsnet forum has confirmed that this target is now history.
Instead the aim is now that all working age DLA claimants will have received their invitation letters by late 2018, with the final assessments and transfers not being completed until mid-2019.
Same Difference is back online as our editor has returned from an unexpected break in posting. Posting will be light this week, and heavier, hopefully, from the first week of August.
While our editor was away, she caught two pieces of disability sports news which she wishes to highlight.
The first was the very sad death of Paralympian Abdullah Hayayei in a tragic freak accident during training for the recent World Para Athletics Championships. RIP Sir.
The second was Wimbledon’s wheelchair tournament. We sincerely congratulate all winners and participants!
Please everyone who is currently on ESA/DLA or PIP please read
I really don’t know where to start on this
I had my “compliance interview” today,, the actual allegations were even more petty and pathetic than I first feared
The complaints (2 of them) were made May and June this yr (the second was made after the letter re the interview was sent)
A little too much of a coincidence as it is just after I raised another issue with the “Bastard Ratdog” (ongoing problem I tried to help other residents with and more accusations from the same people ensued)
One was made over the “Benefit fraud hotline” and one online
I’m not sure in which order they were placed but
1 I have been reported for benefit fraud as I have been “observed”
A) shopping
B) carrying cans of beer
C) going into the city on occasions
David Gauke, the new work and pensions secretary, has been urged to delay the mass rollout of the new universal credit benefit, after Citizens Advice produced fresh evidence that it is causing debt and financial insecurity among recipients.
The advisory charity surveyed 800 people who sought help with universal credit in pilot areas, finding 39% were waiting more than six weeks to receive their first payment and more than half (57%) were having to borrow money to get by during that time.
The report also detailed problems with the online application system and long waits to get help over the phone. It said nearly a third (30%) of those surveyed said they had to make more than 10 calls to the universal credit helpline during their application process, often having to wait over 30 minutes to get through.
The evidence from Citizens Advice is the latest in a long line of warnings about problems with universal credit, which involves wrapping six existing benefits into a single monthly payment.
Around two-fifths of the payments go to people in work rather than those who are unemployed, as it includes recipients of tax credits and housing benefit, as well as jobseeker’s allowance and disability benefits. The benefit is currently paid to around 530,000 people in trial areas but it this number will rise sharply in the autumn, when it is due to be rolled out to 50 new areas.
Earlier this year former welfare minister Lord Freud admitted to MPs that administrative problems and design issues with universal credit were causing about one in four low-income tenants to run up rent arrears, putting them at risk of eviction.
Freud, who has helped oversee the development of universal credit over the past six years, also suggested that the long formal waiting times faced by claimants before they receive a first payment when they move on to the new benefit should be shortened.
Citizens Advice is now calling not just for a pause in the rollout of universal credit until its problems are fixed but a reduction in the time period that people have to wait for their first payment and greater awareness of advance payment for those who cannot cope with delays.
It said it had supported more than 30,000 people with universal credit issues in the last year, with a quarter also needing help with debt issues. Gillian Guy, chief executive of the charity, said: “Universal credit is already failing too many people, pushing them into debt and leaving them without the means to make ends meet.
“Citizens Advice supports the principles of universal credit, but pushing ahead with rollout while the system remains beset with problems will put thousands more families at financial risk.
“The government needs to pause plans to accelerate the rollout of full service universal credit this autumn and devote the time and resource needed to tackle the key problems which mean the system is not working.”
The Department for Work and Pensions insisted the vast majority of claimants have said they were satisfied with universal credit and argued the survey of 800 people seeking help for problems was unrepresentative.
A spokesman for the deparment said: “As Citizens Advice makes clear, this report is based on evidence from a self-selecting group of people and is not representative of the half a million people claiming universal credit.
“The best way to help people pay their rent and improve their lives is to help them into work, and under universal credit people are moving into work faster and staying in work longer than under the old system.
“Universal credit is designed to mirror the way many people in work are paid, and we have budgeting advice and benefit advances available for anyone who needs extra help.
“The vast majority of claimants have told us they are satisfied with UC. We are rolling out universal credit in a gradual, safe and secure way, and in the rare cases where issues arise, we work closely with local authorities and landlords to support people when they need it.”
The Ruderman Family Foundation, a leading disability rights group, has come out against the new film Blind, starring Alec Baldwin, in which the actor plays a novelist who loses his sight in a car crash.
The organization, which frequently advocates for the casting of disabled actors and has conducted many studies documenting the lack of opportunity for disabled actors in film, released a statement on Wednesday condemning the movie (directed by Michael Mailer), which co-stars Demi Moore as the wife of an indicted businessman who cares for Baldwin’s character as part of a plea bargain.
“Alec Baldwin in Blind is just the latest example of treating disability as a costume,” said Jay Ruderman, the foundation’s president. “We no longer find it acceptable for white actors to portray black characters. Disability as a costume needs to also become universally unacceptable.”
The private philanthropic group, which was established in Boston in 2002 and is run by the Ruderman family, has also spoken out against depictions of disabled people in films such as Me Before You, which ends with the assisted suicide of its main character, who is paralyzed.
“The upcoming release of the movie Me Before You presents a deeply troubling message to our society about people with disabilities,” Ruderman said in June 2016. “To the millions of people with significant disabilities currently leading fulfilling, rich lives, it posits that they are better off committing suicide.”
Last summer, the foundation released the Ruderman White Paper on Employment of Actors With Disabilities in Television, finding that 95% of disabled characters on television are played by able-bodied performers. At the time, Ruderman lambasted the industry for “systematically casting able-bodied actors portraying characters with disabilities”. Soon after, he and Danny Woodburn, another disabilities activist who portrayed Mickey Abbott on the sitcom Seinfeld, co-authored an op-ed in the Los Angeles Times shedding light on the cause.
Neither Mailer nor Baldwin has responded to the foundation’s claims.
But progress in many cases is slow and patchy, and more needs to be done if those who are appointed are to reflect the diversity of Britain. This applies especially to the appointment of chairs of public bodies. Responsibility, and the credit, for this performance lie with government ministers and departments who do the appointing. I don’t. My role is to report and to champion diversity, highlighting good practice and urging changes that will broaden the range of potential, and actual, appointees to the boards of public bodies.
The statistics are an accumulation of decisions made across Whitehall, co-ordinated by the Centre for Public Appointments in the Cabinet Office. The link between the desire for greater diversity and the outcomes is in many respects indirect and, in part, fortuitous. There are good intentions but the levers of decision-making that can produce increased diversity are widely spread.
First, the good news: the marked improvement in recent years in the number of female candidates appointed has been sustained at just over 45%, up from about 35% at the beginning of the decade. Moreover, nearly half of new appointments (48.5% ) are women, including just over half of those appointed to advisory bodies.
There are also positive trends on the appointment and reappointment of BAME candidates, now up to a new peak of 9.1%. Encouragingly, the figure is even higher for new appointments at 10.2%, though this is still well below the number of BAME people in England and Wales, which is 14%.
Progress has also been made on appointments and reappointments of people declaring a disability, now at 6%, the second highest level in the past five years. While three-fifths of public appointments go to those aged over 33 – a reflection both of experience and availability of time – for the first time nearly 12%of appointments and reappointments went to candidates aged under 45.
Now comes the but – these trends are in the right direction but there is still a long way to go to reach acceptable levels of diversity.
In particular, the level of more diverse appointments to chairs of public bodies remains disappointingly low: only 28% for women, 5.2% for BAME candidates and less than 3% for those declaring a disability. This means that out of 136 appointments and reappointments of chairs, just seven were BAME applicants and three were those declaring a disability. These figures are worryingly small. I do not believe that there are so few suitable potential chairs of public bodies among BAME and disabled groups, and the number of women appointed as chairs is also still too low. From my own contacts among BAME and disabled groups, I have met a number of people with the potential to be candidates to chair our public bodies.
Departments need to do more to seek out and encourage applications from these groups. While nearly three-fifths of applicants for all public body positions in 2016-17 were men, women were more likely to be selected for interview than men, pointing to a high quality of female candidates. Moreover, women were then more likely to to be appointed.
The relative position was less positive for BAME applicants, less than a fifth of whom were interviewed against nearly a quarter of the white/unknown category. Overall, just 8.6% of BAME applicants were appointed, against 11.8% in the white/unknown group. I hope to understand more of the reasons for this in discussions I intend to hold around Whitehall.
For candidates declaring a disability, the key is getting an interview. More than two-fifths (42.1%) of those interviewed were appointed, against less than a quarter (24.1%) of those not declaring a disability who were interviewed. Overall, 8.7% of applicants declaring a disability were appointed, against 5.3% of those not declaring a disability. That should reassure those with disabilities that it is worthwhile to apply, and it is good that departments are using the guaranteed interview scheme to widen opportunities for disabled people.
But the statistics themselves are patchy. While only 2% of appointees do not declare their gender, more than a fifth either choose not to declare their ethnic background or it is unknown, while nearly a quarter either choose not to declare their disability status or it is unknown. My office is working with the Cabinet Office and with departments to improve the information returned.
More needs to be done to publicise opportunities beyond the Centre for Public Appointments website by using social media and personal networks. A key argument is to persuade people that these roles are suitable for them and that the odds are not stacked against them.
The Centre for Public Appointments is already building lists of potential candidates and it is clear that more can be done to nurture a pipeline here. There are already some promising initiatives to encourage diversity and I will be publishing case studies on my website.
The work capability assessment (WCA) is “too harsh” Iain Duncan Smith, former work and pensions minister and architect of universal credit and personal independence payment has claimed.
IDS told a meeting organised by the Spectator magazine last week that, when he was secretary of state, he realised that the test for incapacity for work forced claimants to make a “cliff edge” choice between full-time work or not working at all.
IDS claims that he carried out five reviews of the WCA but that it remained ineffective.
“It was quite obvious to us that the system was far too narrow, was acting in a far too harsh manner and was making judgements about people.
“The whole process of having a benefit that says you are either too sick to work or you can work, actually works against the nature of how people think of themselves.
“I came to the conclusion that it was time to review the whole way we do this and remove the cliff edge.”
“The cliff edge tempts people to make wrong declarations. And it means that whatever assessment you’re making becomes very critical, which adds extra stress,” IDS claimed.
According to IDS, a system which allowed people to be found fit for work for just a certain number of hours a week would be more effective.
A report by the University of Oxford published last week has found that over half of Trussell Trust foodbank users belong to a household with a disabled person in it. The report also found that benefits sanctions and delays in benefits payments are a major cause of foodbank use, with claimants in the work-related activity group of employment and support allowance particularly at risk.
The report looked at over 400 households that have used foodbanks. It found that:
Over 50% of households included a disabled person.
75% experienced ill health in their household.
Mental health conditions affected people in 1/3 of households.
Nearly 2 in 5 people were awaiting a benefit payment, with most of these waiting up to 6 weeks, though a fifth were waiting 7 weeks or more. A third of delays were for Employment Support Allowance payments, with people in the work related activity group particularly at risk of needing a foodbank.
Dr Rachel Loopstra, the lead author of the report, Lecturer in Nutrition at King’s College London, and Associate Member of the Department of Sociology, University of Oxford, said:
“We observed how commonly income or expenditure shocks, whether arising from a delay in receiving a benefit payment, from a benefit sanction, or from rising energy costs, tipped households into food bank use.
“But these shocks, and resulting food bank usage, occur among people who live with extremely low incomes and chronic food insecurity, where meeting basic needs is an ongoing struggle.
“The severity and chronicity of food insecurity and other forms of destitution we observed amongst people using food banks are serious public health concerns.”
The report made a number of recommendations, including:
An inquiry into adequacy of benefits and support for disabled people or people with long-term health conditions that make getting into work, or staying in work, difficult or impossible, as well as continued commitment to reviewing the appropriateness of Work Capability Assessments, would be invaluable.
Delays in benefit payments must be addressed with urgency, with more support provided for people affected, with a view to indexing benefits to the cost of living.
However, David Gauke, the new secretary of state for work and pensions, has already made it clear that the freeze on benefits uprating will remain and that, in his view, increased food bank use is largely down to increased awareness of their existence:
“I would expect the benefit freeze to continue. It is sometimes scoffed at, but the fact is there is much greater awareness of food banks than was the case previously. It’s become much more widely used.
“If we want to reduce poverty, if we want to reduce the need for people to use food banks, it’s that we have got to have a strong economy that creates jobs.”
This is likely to be a very long blog and I make no apologies as this is important information we all need to get to grips with to survive.
Universal Credit (UC) is slowly being rolled out across the UK for some claimants , mainly single claimants and to be continued for couples. The legacy benefits that people are currently getting will eventually become Universal Credit,which runs a live programme (with gateway conditions) and a full rollout programme (no gateway conditions)alongside each other. Advisors will need to determine which is operating in their area and inform clients and explain in full their rights and eligibility. The fact that some will get hit hard is just the scratch on surface to the vile and brutal conditions of the health & work programme which is incorporated within it. ESA Claimants in WRAG (Work Related Activity Group) will lose the £30 a week…
I missed an appointment. When I challenged this, it turned out the appointment had been 3 years ago, and I’d attended.
They asked me to provide a timetable of my (part-time) studies. When I did they asked me for a ‘learning agreement’, which my uni does not have. My tutor personally wrote a letter explaining the course, and how much time it took up in my life. They then said they couldn’t comment on the letter for two weeks. When the two weeks were up, they said they needed the letter stamped by the uni. But wouldn’t give me the original copy back. For another two weeks they ‘couldn’t comment’ on whether the new letter was suitable. Two weeks later, they said it wasn’t. They asked for a form (number Erieajflksjdlkajfla or whatever). No one at the job centre knew what this form was. I spent an entire week walking to the job centre (despite being disabled, because I couldn’t afford the bus), spending at least two hours there arguing with staff about the form, and then walking home again. When I pointed out I had been without money for over a month, and couldn’t afford travel or food, they offered me food vouchers to a foodbank that was even further away than the job centre. When they finally agreed that the form didn’t exist, had never existed, and that I didn’t need it anyway, they asked for another letter from my uni. Which they then faxed to a wrong number. When I mailed it by post, they said they hadn’t received it. By this time I was leaving for uni two hours early so that I could walk and rest along the way. I was shoplifting food, and not really leaving the house unless it was to argue with the job centre, or go to uni. During all this I had to apply for approximately 5 jobs a day, and log them on the jobcentre’s website. I also had to sign on at the job centre. At first this was every two weeks, then every week, then for a while every day at a different time each day. I wasn’t told the time of my daily appointments until 24 hours before. At one point I broke down in tears saying it felt like punishment. My job advisor refused to look at me and sighed until I stopped crying. When the staff at the job centre decided they would no longer talk to me, with one shouting “I’m not talking to THAT WOMAN” the minute I entered the building, I began calling the DWP every day. It cost 15p a minute. Sometimes I was on hold for 40 minutes or more. Often I would start the call in tears, as an ‘advisor’ asked me to provide ‘evidence’ I had already provided multiple times. As the call progressed I would become angry, then irate, and it would generally end with me screaming about how I had no money, and then they would hang up on me. Inexplicably after 3 months I got my benefits paid, and back paid. I used it to pay my friends back, and to fill my food cupboards in case this happened again.
They said they ‘forgot’.
Someone reported me to the benefits advice tips line, saying I had a trust fund, and a ‘lucrative’ part time job. During the time my money was stopped I was so depressed that all I ate was a piece of ryvita a day. When I spoke to the team to prove I did not have a trust fund or lucrative part time job, I was so nervous I couldn’t stand up without nearly fainting.
The website that the jobcentre required me to update with my job applications and searching, went down, and deleted all that week’s entries. When my job advisor logged in to check my account she said I hadn’t done any work and so she was going to sanction me. I began crying hysterically, and she told me to come in for daily sign ons for a week. Again I said this sounded like punishment. She said it was clear I needed ‘more supervision to get back into employment’. The next day I came in to sign on, she pulled up my job log on the website, and the last two week’s entries had all reappeared. I asked if she could take me off the sanction. She declined. For two weeks I came in for daily sign ons, to ‘support’ me. All that happened was I waited 30 mins in silence on a sofa, then signed an electric tablet and left. I was told I could appeal my sanction, but the paperwork came through so late that by the time I had enough evidence collected, the date to appeal had passed.
Despite me changing my address with them 6 months before, and receiving paperwork at my new address confirming the change, they sent a letter for an appointment to my old address. When I missed this appointment they cut off my benefits, and housing benefits. I was late with my rent. It took 3 weeks to get my benefits back.
I went to a medical assessment, while suffering from an incredibly bad mental health episode, and recovering from major surgery. When I talked about my suicidal ideations/intrusive thoughts the assessor asked me to tell her the methods I would use to kill myself, in detail. Six weeks later she awarded me no points, and all my benefits were cut off.
My job advisor forgot to press the button that confirmed I had attended my sign on appointment, and which triggered my payments. On three separate occasions.
Maria Quinn, who is partially sighted and walks with the aid of a wheeled frame, described how she was left feeling “mortified and panicked” after finding there was no step-free access for her consultation at a disability benefits centre.
With her solicitor carrying her mobility aid and her sister holding her breathing equipment, Ms Quinn, 32, managed to enter the building on Glasgow’s Cadogan Street by “crawling up the two split-level stairs”.
She said she was refused the portable ramp which can be used to cover the entrance stairs as it was intended for wheelchairs only, and if she had returned to her flat to collect her chair she would have been late and missed the appointment.
“There is no ramp or flat entrance to the disability assessment building…that’s right folks! You read it correctly,” Ms Quinn wrote on Facebook
“I am partially sighted and stairs aren’t my best buds at the best of times but these are ye olde ultra solid not-concrete-but-possibly-some-sort of-titanium-killer-stairs…you know the ones! Crumbly ends from centuries of feet and furniture and goodness knows what.”
Campaigners at disability charity Scope said her case highlighted the difficulties disabled people face in trying to attend assessments, and called for an overhaul of how they are carried out.
James Taylor, Scope’s head of policy, said disabled people were suffering “unnecessary anxiety or distress” because of the way benefits assessments were being handled.
He told The Independent the Government must “adopt a more flexible approach in how it carries out Personal Independence Payment assessments for disabled people in these situations and ensure assessment centres provide accessible options for disabled people”.
“No one should be forced to drag themselves up a staircase in order to attend their benefits appointment – to subject anyone to this level of humiliation is simply deplorable,” he added.
“We’ve heard too many stories of disabled people who are caused unnecessary anxiety or distress when attending benefits assessments – being forced to travel unreasonable distances for their appointments or struggling to access the centres themselves.
“Disabled people we speak to often tell us that a face-to-face assessment is not always the best method of assessment, due to accessibility.”
A spokesman for the Department for Work and Pensions said: “Where an assessment centre isn’t directly accessible from the street level, we endeavour to make this clear to people before they arrive for their appointment.
“There is a ramp available at the Glasgow Assessment Centre – if people can’t use this, arrangements will be made to see them at an alternative location.”
Today was pretty grim to be honest. I’m sure that you are most likely fed up of me saying this now but it was. The weather was awful, rain was pouring down and it was cold. It felt more like autumn not summer.
The reason for my mood not being brilliant was simple. I had received a message saying that they thought that the demos aren’t going anywhere amongst other things.
I, and other members beg to differ.
The demo has been happening for nearly four years now, every week, and there has never been a week off. We have helped countless numbers of people, advised them, fed them, prevented suicides and also we have and still do empower people to challenge the system. This is the best form of retaliation against the government that there is. It worked during the poll tax years, and it’s working now.
The charity Action for ME said a safeguarding referral to a child protection team had been made against one in five respondents.
Its chief executive said children and their carers faced the “double whammy” of an ME diagnosis and not being believed about their condition.
NHS England has been asked to comment.
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome, is a debilitating disease that has a major impact on the lives of those affected. It causes persistent fatigue that does not go away with rest or sleep.
It affects about 25,000 children in the UK.
Out of 270 respondents to the survey, one in five said they had had a safeguarding referral to a child protection team made against them.
Half of the referrals involved allegations that parents had fabricated or induced their child’s illness, although 70% of all the cases referred to social services were dropped within a year.
‘Lives stolen’
Sonya Chowdhury, CEO of Action for ME, which is based in Keynsham, near Bristol, said: “Ninety-six per cent of the parents felt that their children’s care had been affected by a lack of understanding of ME and nearly 100% of parents were concerned their child had not been believed.
“If people are not believing a child about an illness even when there is a diagnosis, those children are facing a double whammy.
“Not only have they had their lives stolen as a result of illness, they’ve had their lives affected and traumatised as a result of the system.”
She said the charity would be carrying out further investigations into the claims.
England’s chief social worker Isabelle Trowler said: “It’s important that all the professionals who work with young people have a firm understanding of conditions like ME and the impact these can have on their daily lives, so they can access the same opportunities as their peers.
“I have met and continue to meet with groups and organisations including Forward-ME, and will work collaboratively with them and a national network of social workers to further professional understanding of children with ME.”
An investigation of the survey and treatments for ME is on Radio 4’s File on 4 on Tuesday at 20:00 BST.
I first went to Glastonbury in 1983, when I was 19, and continued going for five years, like a rite of passage. It felt like a rebel enclave, an escape to a utopia prepared to stick two fingers up to the Tory tyranny which was sweeping the country. It felt highly political – all proceeds went to CND – a kind of gathering of tribes and people who had an alternative swing on life who, when they were there, could forget their troubles and express themselves freely. Some people walked around naked, others sold Killing Joke badges pinned to their underpants, many indulged in the array of drugs available along its paths – a real-time Silk Road, long before the online version.
When I look back now, much of what I remember has morphed into one big bubble. UB40 on the Pyramid stage in my first year blew me away, as did the Psychedelic Furs a couple of years later, with the obligatory laser show sending us all varying shades of green. You always had to take the rough with the smooth – the great flood of 1985 saw our tent stolen, and England’s defeat to Argentina in 1986 watched on an 8-inch black and white TV wired up to a car battery, was hard to take – but those five days were always the highlight of my year.
I never expected to make a return. The onset of multiple sclerosis in 1997 increasingly reduced my mobility and I have been confined to a wheelchair since 2007.
So when my friend Rich, who works at The Guardian, mooted the idea of my going back to write an article on accessibility, I nearly bit his hand off. Of course I knew it would not be easy – it is, after all, a festival in a field and I’m quite dependent in terms of my needs – but I was determined to revisit my old stomping ground.
With visions of being marooned in a sea of mud if the heavens opened, I got my old school buddy, Grant, to come along and hired an all-terrain wheelchair.
The number of deaf and disabled people registering for access facilities at Glastonbury has increased by 700% since 2007 and this year, it hosted around 400 ticket holders with disabilities. Katie Moyes, an accessibility co-ordinator at the festival who works closely with Attitude is Everything, a charity whose mission is improve deaf and disabled people’s access to live music, is proud of what’s been achieved. She says: “It is a great feeling to provide facilities to those who could not attend and enjoy the festival without them”.
Although it was physically chaotic getting into Glastonbury, with long queues in the searing heat, the Spring Ground accessible campsite, which is a stone’s throw from the John Peel stage, was perfect. It’s equipped with accessible showers, toilets, mobility scooter hire and its own bus service. Many of its campers have attended countless times and there was a real community buzz about the place, which was contagious. I chatted to countless people with a host of different conditions, from cerebral palsy, to fibromyalgia to arthritis, and all were passionate about the festival. Some worked for the price of their tickets by helping marshall traffic or directing people on the viewing platforms, immersing themselves in the atmosphere and making the festival a second home.
The accessible campsite was also an ideal base because of its proximity to some of the most popular areas. And as our tickets allowed us access to all areas, we could use the quickest and quietest routes to avoid the crowds.
There are still improvements that would make it even easier for disabled festival-goers. I battled my way around on my more versatile mountaintrike as a manual chair couldn’t take the undulating ground and rocky paths. A defence against flooding has improved access and luckily there are lots of disabled toilets, but all the stones and potholes threatened to play havoc with my bladder.
A glimpse of the Glastonbury I used to know can still be found in the green and stone circle fields, but the festival has evolved so much I might as well have landed on the moon, for what I remembered of it. There are more than 100 stages offering countless attractions: at times I was totally swamped by the immense crowds around the main stages. But the 12 viewing platforms allowed me to see a host of bands, even if they too got a little crowded with metal grinding against metal as chairs jostled for the best position. If I just wanted to chill out there were also plenty of places to escape to, such as the theatre and circus fields which were flat, easy to get about in, and not as busy.
Outdoor festivals will never be perfect for people with disabilities and camping in a wheelchair is not straightforward. Still, Glastonbury sets a benchmark for others to follow by making things as easy as possible. It won’t suit everyone in a wheelchair, but when I woke on Monday morning, I felt proud to have made it through to the other side.
If you want to escape your comfort zone and live a bit then it’s definitely the place to be.
“Connected to other part,” my iPhone says to me as I stand somewhere in London’s Soho, trying to decipher the letter on the top of a bus stop.
“Hello?” says an American woman, reminding me of Scarlett Johansson’s disembodied artificially intelligent character from the sci-fi film Her.
“Hey, er … can you give me a hand by reading the letter on the bus stop?” I ask.
“Sure … can you move your phone a bit more up, and to the left … Ya! It says … F.”
Result. I thank her, end the session, pull up Citymapper and navigate my way onto the 453 going to New Cross.
I have a little bit of vision, but only enough to see motion and movement.
I am using an app called Be My Eyes, an app that connects blind and visually impaired people to sighted volunteers via a remote video connection. Through the phone’s camera, the blind person is able to show the sighted individual what they are looking at in the real world, allowing the volunteer to assist them with any of their vision-related problems.
I began to lose my sight in the summer of 2013 to a rare genetic mitochondrial disease called Leber’s hereditary optic neuropathy and was soon registered blind. I consequently found myself relying on an assortment of assistive technologies to do the simplest of tasks.
Be My Eyes has just over 35,000 visually-impaired users registered for the app and over half a million volunteers. Whenever a visually impaired user requests assistance a sighted volunteer receives a notification and a video connection is established.
Its benefits are obvious. Jose Ranola, a 55-year-old from the Philippines who works in construction and has retinitis pigmentosa, said: “I use it to help me identify medicine and read printed materials and also to describe places and objects.” He adds: “All my experiences were good. The volunteers were very helpful.”
James Frank, a 49-year-old counsellor in Minnesota, US, who has severely damaged optic nerves, is also a fan. “The response has been favourable and the volunteers are always polite,” he says. “The longest I have waited is maybe a minute.”
Brenda Smith, 51, who lives in Brisbane, Australia, has the same condition as I do. She says she uses Be My Eyes for day-to-day tasks like reading instructions on food and telling apart the white bread her son eats from the brown bread she does. She says she also used it recently to guide her to which switch had thrown in the electricity box.
In the UK there are over 2 million who have some form of sight loss and an estimated 285 million people registered blind or visually impaired worldwide. Technology has long been playing a roles in improving their lives. In the mid-1970s Ray Kurzweil, a pioneer in optical character recognition (OCR) – software that can recognise printed text – founded Kurzweil Computer Products and programmed omni-font, the first OCR program with the ability to recognise any kind of print style. He went on to make the Kurzweil Reading Machine, the first ever print-to-speech reading machine for the use of the blind.
Now, there’s a new booming age in the field of accessibility, driven in part by smartphones and high-speed connectivity. Screen readers have developed to such an extent that braille is no longer taught.
All the time, companies are finding new ways to improve accessibility and Be My Eyes isn’t the only assistive technology company taking advantage of the real time human element, building technology that is based on the creation of dialogue with its users.
In May, startup Aira, the first product out of AT&T’s Foundry for Connected Health raised $12m in funding. Aira’s platform takes advantage of pre-existing wearable smart glasses, like Google Glass, and uses the mounted camera. But where Be My Eyes and Aira differ is that Aira incorporates remote human agents using the gig economy and has plans for artificial intelligence assistance. This allows it to connect trained, paid, independent contractors with blind people to assist them in day-to-day tasks in real time. The glasses stream everything the user is seeing to an agent who, sitting in front of a dashboard, is able to assist the user with everything from reading signs to shopping, to navigating, to the numerous other mundane tasks that sighted individuals take for granted. Through the glasses, the agent is able to talk to the user and give them detailed information about their surroundings. There is a hope that through machine-learning, the agents will be able to teach and AI how to command users to perform certain tasks. Aira has the backing from venture capital firms like Jazz Venture Partners and Lux Capital. As yet it is currently only available in the United States.
Earlier this year, Aira helped Erich Manser, who has retinitis pigmentosa, run the Boston marathon. Through the glasses, Aira’s agent, Jessica, was able to give him all the information that he needed regarding his surroundings. The two had been working together since Jessica first became an Aira agent the previous summer. By developing code words and short commands, Jessica, with the assistance of a sighted guide, was able to direct Erich past any obstacles, onto specific routes and onto the finish line to pass it safely. This was Erich Manser’s eighth Boston marathon, but his first with the assistive technology.
It’s not just in linking sighted people with visually impaired users that technology is able to help. The Sunu band, partially funded through Indiegogo, is trying to help improve people’s ability to perceive their surroundings. Based in Boston and Mexico, Sunu is a technology start-up creating a bracelet that uses ultrasonic sonar technology to detect the user’s surroundings and send haptic feedback whenever an obstacle comes into proximity. The ultrasonic waves emitted from the band’s transducer bounce off obstacles and are translated into vibrations that get increasingly more frequent the closer the user gets to the obstacle.
The next generation of tech advancements can go even further to help blind people.Autonomous vehicles, if built with the kind of intuitive AI voice-enabled assistive solutions like Amazon’s Alexa or Apple’s Siri that are already helping in the home, will give blind people increased independence. It is just a matter of making these solutions integral to design when developing the vehicles.
Smith tells me: “It just blows me away to the extent that gadgets have grown. I was so terrified when I got my first mobile phone, can’t even remember when it was, it was so long ago. Maybe 15 or 16 years. No speech though, had to use it by memory and hope for the best that you were turning it on and off correctly. And there was no way of texting. Then when Nokias came on the scene, then the iPhone, just unbelievable.” She adds: “It’s honestly fantastic some of the things that have been developed – although there is always room for improvement and advancement.”
Frank feels similarly: “I think it is all great. Compared to where we were 30 years ago there is no comparison. If there is any good time to be blind, it is now because of all of the advancements there have been with technology
It’s not just for the blind. Autonomous vehicles will have the capability to revolutionise access and liberate people who have limited mobility, while assistive technologies are being developed for all kinds of other impairments. From the stair-climbing Scewo wheelchair, to grip-adjusting bionic arms, technology is offering the biggest leaps forward in accessibility for years and has the ability to significantly improve the lives of so many.
Universal credit, which pulls together six separate benefits into one monthly payment, has been dogged by criticism that design flaws and payment delays were causing low-income claimants to run up rent arrears and rely on food banks.
Kensington and Chelsea was due to move to the “full service” digital-only universal credit on 19 July as part of the wider phasing in of the system across the UK by 2018, but the Department for Work and Pensions said the North Kensington jobcentre would now be excluded.
It is understood that DWP officials were nervous that any disruption to benefits caused by teething problems associated with the new system would cause extra difficulties for local claimants already coping with the tower blaze and its aftermath.
A DWP spokesperson said: “The priority is to make sure people affected by the Grenfell Tower fire get the help they need. That’s why we will defer the rollout of the full universal credit service to North Kensington that was due to take place next month, so staff can focus on providing that extra support to affected residents.”
The shadow work and pensions secretary, Debbie Abrahams, said: “We welcome this initial step to ensuring that those affected by the awful events at Grenfell Tower do not face the difficulties that so many social security claimants on universal credit do, on top of the trauma and distress they will be facing, as they try to come to terms with this dreadful tragedy.”
Just two months ago, a cross-party committee of MPs highlighted serious concerns with the operation of universal credit, including claimants waiting 12 weeks or more for their first payment, resulting in hardship and distress.
Campaigners have long being calling for changes to the design of universal credit. In particular they have argued that the 42-day wait for a first benefit payment has left many poorer claimants destitute.
In April the Trussell Trust food bank network reported that in areas where the full universal credit rollout had taken place, food bank referral rates were running at more than double the national average.
The DWP announced on Tuesday it had exempted claimants in North Kensington from normal unemployment benefit rules after residents expressed fears that Grenfell Tower survivors might be sanctioned for failing to look for work.
The department said it did not know how many North Kensington claimants would have moved on to the new system next month. Only those making new benefit claims, or renewing existing ones as a result of changed circumstances, such as losing a job, or moving house, would initially switch to universal credit.
The Royal College of Occupational Therapists’ 2017 conference, taking place on Monday and Tuesday this week, has been sponsored by Capita, one of the private companies contracted to carry out Personal Independence Payments assessments.* I have written an open letter to the Royal College outlining why I think this is a terrible idea. I am collecting signatures for it until the end of the day onFriday June 23. After that I will email it to the Royal College and also publish the list of signatories here.If you are a disabled person / service user / survivor / healthcare professional and would be willing to put your name to the letter below, please contact me with the name & title you would like to go on the letter (e.g. I will sign as Rachel Rowan Olive, PIP claimant & mental health service user).
Cox became the first British athlete since 1988 to win a medal in two sports at the same Games, in Rio last summer.
She is prioritising athletics over cycling this year, seeking to add to her medal haul at the World Para Athletics Championships in London next month.
Cox had a stroke aged 23 and was later diagnosed with multiple sclerosis.
As well as the gold medals she took athletics silver in the 4x100m relay and bronze in the 100m, and was picked to be Britain’s flag-bearer at the Rio closing ceremony.
Regular readers will know I don’t usually write such shouty headlines. But this time I can’t help myself.
I never thought I’d be sitting here today, writing a post with that title on this site. But yes, it’s true.
Ten years ago today, a University student sat in her bedroom and started a blog. That blog was Same Difference and that University student was me.
Ten years later, I’ve got my University degree. Ten years later, I like to call myself a journalist. Ten years later, I’m very proud to say, over two million people have visited Same Difference and read my scribbles.
I still value every comment, more than you will ever know. I still appreciate every hit, every like and every share, more than you will ever know.
And, once a year, every 21st of June, I still write a general post to thank every single reader of my little website.
It’s a tiny little address on the massive World Wide Web, but to me, it’s the world. I’m so glad that to you, it’s a place where you find, and share, useful and interesting information and stories.
I wouldn’t be here without you, readers. So THANK YOU, every single one of you, more than you will ever know.
Last week, my charity Wheels for Wellbeing published the results of a national survey of disabled cyclists which is, to our knowledge, the first of its kind. The results largely confirmed our suspicions, including that disabled cyclists – though part of our cycling culture – remain excluded from it in a number of ways.
In particular, the results are an endorsement of our flagship campaign seeking recognition for cycles as a mobility aid. In most people’s minds, a mobility aid is a wheelchair, a mobility scooter or a guide dog – but our survey confirms that many people also use bicycles.
In fact, the majority of disabled cyclists (69% of our survey group) find cycling easier than walking and many use their cycle as a mobility aid. Cycling reduces strain on the joints, aids balance and alleviates breathing difficulties – but cycles are not legally recognised in the same way as wheelchairs or mobility scooters.
As a result of this legislative oversight, disabled cyclists regularly encounter difficulties. For instance, our survey revealed that one in three disabled cyclists have been asked to dismount and walk their cycle, even though they were using it as a mobility aid. Typically, such situations occur on footways or in pedestrianised areas, such as train concourses, where mobility scooters are readily permitted but cycles and cycling are not.
Phil, who is 60 and originally from Preston, says: “I use my bike as a sort of rolling walking stick when I walk and I can cycle very long distances without pain. I therefore class my bike as a mobility aid. However, it is very difficult to have this recognised in certain situations – for example in parks or other large outdoor venues. All they see is a bike. It would be so easy to modify a ‘no bikes’ rule to say ‘unless used as a mobility aid’.”
A similar problem also arises when using public transport. As one survey respondent lamented: “I would love to be able to go to places like Lea Valley … but can’t take my trike on the train as it is not viewed as a mobility aid, as a mobility scooter would be.”
It is interesting to note that a further 11% of disabled cyclists said they had been allowed to cycle in a pedestrianised area once they’d explained that their cycle was their mobility aid, suggesting a variation in police and local authority understanding on the issue.
Though the mobility aid concept is clearly an important issue, disabled cyclists said inaccessible cycling infrastructure was the biggest difficulty they face. This is usually down to narrow cycle lanes, bollards and anti-motorcycle barriers that restrict or deny access to non-standard cycles such as handcycles, tricycles and tandems.
The cost of non-standard cycles also featured high on the list of disabled cyclists’ grievances, with a significant number suggesting that the introduction of subsidies would help them to find the right kind of cycle.
Disabled cyclists who responded to the survey were most likely to be middle-aged, tended to cycle regularly (most likely weekly or daily) and cycled mainly for leisure or fun. One statistic that may come as a surprise to many was that 40% of disabled cyclists own a standard two-wheeled bicycle. A further 18% said that they own a cycle that uses electric assistance.
The results of our survey challenge some widely held assumptions about disabled people and cycling, and highlight a need to carry out more research. For too long disabled cyclists have been neglected in cycling culture. It’s time for the cycling world to look beyond the bicycle.
He was best known for presenting BBC’s Play School for 21 years from 1964, and Play Away from 1971 to 1984.
His agent said he had been living with Parkinson’s disease and died at Denville Hall, a retirement home often used by those in the entertainment industry.
A statement from the family said: “He lived courageously with Parkinson’s disease for a long time.”
Cant was also a guest presenter on Jackanory and appeared on ITV’s Dappledown Farm, which ran from 1990 to 2003.
He got his big break when he auditioned for Play School, when part of the audition required him to climb into a cardboard box.
His voice was known to millions in shows such as Trumpton, his most famous line being the fire brigade call-out: “Pugh, Pugh, Barney McGrew, Cuthbert, Dibble, Grub.”
For millions his voice immediately evokes childhood.
In the early ’60s – an audition in which he was asked to sit in a cardboard box led to a job on a new programme called Play School.
Born in Ipswich, he trained as a printer before having a go at acting.
The warm, friendly voice was perfect for another children’s venture – Trumpton, Camberwick Green – and the slightly more industrial Chigley.
If it sounds as though it was recorded in a cupboard, it’s because it was.
Along with Play Away, Bric a Brac and other programmes he was part of children’s TV for more than 20 years.
He wrote and appeared on stage, but more than anything he was – for many – a much loved part of childhood.
Cant’s Play School co-presenter and former Coronation Street star Derek Griffiths paid tribute on Twitter, posting a reunion picture of the team.
Former Blackadder star Sir Tony Robinson also tweeted: “Brian Cant was my mentor and friend on Play Away. We wrote and performed together for two years. Always patient, courteous and funny P-L-A-Y R-I-P.”
Cant was honoured with a special Children’s Bafta award in 2010.
In a BBC interview, he explained that he had been diagnosed with Parkinson’s in 1999.
He said the one thing he wanted children to take away from his work was “that I made them laugh, I made them feel happy”.
On receiving his Bafta, Cant said: “One of the main rules of those Play School days was that we should play to the camera as though we were talking to one child, in whatever circumstance.
“It could be somebody in a tower block, a nice semi-detached somewhere, or a Royal palace. You had to phrase everything so, whoever was watching it, they felt you were talking to them.”
“Deaf people were more engaged than during any other election,” says Charlie Swinbourne, editor of popular deaf news blog Limping Chicken. Facebook and other social networks allowed British Sign Language users to easily post videos, and deaf politics groups were overrun with comments on community matters.
Eleanor Lisney is one of the founders of hashtag #CripTheVoteUK, a campaign to get lots more disabled people voting. Find out how many users they reached and how it got into the UK’s trending top five.
As this was a snap election, there was less time than usual to produce party manifestos in alternative formats, such as BSL and easy read. They were, therefore, published very close to polling day, rather late in the day, says Daniel Gordon who worked on Ouch’s election coverage. We discuss how this impacted on those who need extra time and support to make a decision.
The number of disability living allowance (DLA) claimants being forced to apply for personal independence payment (PIP) has plummeted, DWP statistics released this week show. The DWP have said only that they are “managing capacity within the system.”
The DWP PIP Official Statistics, published on 14 June show a massive drop in the number of claims registered in April 2017. Claims are registered either when a new claim is made or when a current DLA claimant is informed by the DWP that they have to transfer to PIP.
For the current year, the number of PIP registrations was:
January 104,333
February 92,327
March 83,578
April 49,409
That means that there was a huge fall of over 50% in the number of registrations in April as compared to January.
The explanation given by the DWP is that:
“In recent months reassessment registrations have decreased due to DWP managing capacity within the system.”
The DWP also claim that the number of new claims made in April was low due to Easter and a high number of weekends in April.
Nonetheless, the main reason for such a drop has to be that dramatically fewer DLA to PIP cases are being sent to Atos and Capita.
To find numbers of PIP registrations as low as they were in April, you would have to look back to 2014, before the DWP began migrating claimants with indefinite DLA awards to PIP.
We cannot know the precise number of DLA reassessments that took place in April, because the DWP do not give a monthly breakdown of how many registrations are new claims and how many are DLA to PIP reassessments.
However, the DWP do give quarterly breakdowns. So we do know that in the three months to the end of October 2016, 158,400 DLA to PIP reassessments were registered.
In the three months to the end of January 2017, 178,300 were registered.
In the three months to April 2017, just 100,900 were registered.
So, there was a fall of 44% in the number of reassessments in the quarter to April 2017, compared to the quarter to the end of January.
Most of that fall appears to have happened in April itself, meaning that reassessments must have plummeted by at least two thirds, if not more.
The transfer of all working age DLA claimants to PIP was supposed to have been completed by April of this year. In fact there are still around 500,000 DLA claimants waiting for the dreaded reassessment letter to drop through the door.
The DWP are clearly keen to get the transfer of DLA claimants completed, given that they are already so far behind schedule. The fact that they have had to call a temporary halt to the mass transfer of claimants suggests that the assessment providers may be failing to keep up with demand.
It now seems likely that the transfer of all working DLA claimants to PIP will not be completed until some time in 2018.
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