The issue was raised by Lord Addington, who is president of the British Dyslexia Association.
He said it was unfair dyslexic students had to pay up to £600 to have their condition reassessed to claim the disabled students’ allowance at university.
Education Minister Lord Agnew agreed the system should be reviewed.
Disabled university students can claim an allowance to cover extra costs because of their illness such as specialist equipment or a non-medical helper.
Lord Addington asked what justification there was for dyslexic students to be reassessed to get help at university when they had already been diagnosed and received assistance at school.
For other disabilities and mental health conditions, a letter from a doctor is sufficient to prove eligibility.
However, for dyslexia and other specific learning difficulties, such as Dyspraxia and ADHD, a “diagnostic assessment” from a psychologist or suitably qualified specialist teacher is required.
Individuals must be reassessed for university if they were under 16 years old when they were last assessed.
‘Discriminated against’
According to the British Dyslexia Association, the cost of an assessment is £450 with a specialist teacher and £600 with an educational psychologist.
Lord Hunt said this meant students with dyslexia were “discriminated against”.
Lord Agnew said: “In a working paper in 2005, where the British Dyslexia Association was part of the consultation group, the view then was that progress into higher education represented a major transition and that more adult-based assessments should therefore be used.
“The view was that adult needs change and an initial diagnosis in childhood may not apply in adulthood.”
He also pointed out many universities now offered hardship funds to help cover the costs of assessments.
However, he agreed with Lord Addington that a review of the system was “overdue”.
The DWP is yet again showing its contempt for the law by issuing guidance aimed at ensuring that as few claimants as possible benefit from a court decision on safety and supervision.
Until then, the DWP had argued that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.
However, in March a panel of upper tribunal judges held that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.
After a disgraceful 7 month delay during which the DWP ignored the ruling, new guidance was issued to health professionals and decision makers last week, ostensibly to comply with the court ruling.
The DWP also announced that they wold be looking back through cases decided since the ruling to decide if awards should be changed.
In reality, however, the DWP have interpreted the ruling in the narrowest possible way and given a very strong indication to decision makers that they expect very little change in the way cases are decided.
Looking for excuses It is clear that decision makers are being encouraged to trawl through all a claimant’s activities in an attempt to find any excuse for not awarding points. They are advised in new guidance:
“As always it is important to assess the consistency of the evidence. Key pieces of information could include whether they see specialists or have medical input which would support the frequency or severity of incident. It may also be helpful to consider if the claimant is able to undertake activities (such as cycling, swimming, working in a hazardous environment or taking young children out of the house alone), where the severity of harm could be grave.”
In fact, the question is not whether the claimant undertakes activities but whether they can do so in a manner unlikely to cause harm to the claimant or to another person, either during or after completion of the activity.
A claimant might have absolutely no choice but to take a small child to nursery or the doctors, for example, because they are a single parent or because their partner works. The fact that they have done so even repeatedly does not mean that it is safe. If, as the DWP say, the severity of harm could be grave then the likelihood of it happening need only be small for points to be awarded.
There is also the real possibility that a person working in a hazardous environment may be receiving supervision from colleagues to keep them safe. And it can reasonably be argued that anyone who goes swimming in a leisure centre will be being supervised by a trained lifeguard.
Nothing changes The new guidance to decision makers gives 5 examples of claimants who might be affected by the court ruling.
We’ve listed the five examples below and set out what effect the change in the law will have on awards, according to the DWP. You can download the guidance for full details.
Example 1 The claimant has severe learning disabilities and does not have an awareness of danger. The claimant already met descriptors based on safety before the court decision, so their points remain the same. No change of award.
Example 2 The claimant has diabetes with hypoglycaemic events which at their most severe can cause them to lose consciousness. None of the descriptors are met on safety grounds because they have warning symptoms. No change of award.
Example 3 The claimant has narcolepsy events which cause them to lose consciousness. The claimant has their condition under control due to changes in diet, exercise and medication. No change of award.
Example 4
The claimant has absence seizures, without warning, trigger or pattern, up to a few of times a day, which involve them losing focus and entering a trance like state. They do not fall and take reasonable precautions by using safe crossings when making journeys. No change of award.
Example 5 The claimant has epilepsy with tonic-clonic seizures. There are no warning symptoms or triggers and the incidents can happen at any time of the day. There are no warning symptoms or triggers and the incidents can happen at any time of the day. When the clamant has a seizure their body will become stiff and then their arms and legs will start twitching. They may drop any items they are holding and will fall from a standing position. Incidents happen once per week on average.
Points awarded on safety grounds for daily living:
Preparing food. 1 (c) 2 points
Washing and bathing. 4 (c) 2 points
The claimant is awarded 4 additional points for daily living. This does not meet the minimum of 8 points for an award.
Planning and following journeys. No points are awarded as the claimant can take precautions by using safe crossings.
The result is: No change of award.
A nod’s as good as a wink The DWP say they are expecting 10,000 claimants to benefit as a result of the change to the law, we think it should be a great many more. Yet, out of five examples given to decision makers, in not one case does the change in the law result in a change in award.
It would be a very obtuse decision maker indeed who did not get the message that the DWP do not expect them to make any real changes to their decision making as a result of the upper tribunal ruling.
Tribunals, we can only hope, will take a very different view.
You can download ADM memo 29/17: PIP, the meaning of ‘safely’, part 1 and ADM memo 30/17: PIP, the meaning of ‘safely’, part 2, decision makingfrom this page.
Julia and her dance group ‘MerseyGirls’ took to the stage on Britain’s Got Talent, in what they thought would be their last dance together. That’s because Julia has had scoliosis from birth, a condition that causes the spine to curve to the side.
On the show, the group received the Golden Buzzer form judge Alesha Dixon, before Simon Cowell declared that he would pay £175,000 for Julia’s specialist surgery in the US.
She’s now on the road to recovery, and told 5 live finding out he was going to step in and help was the happiest she’d ever been in her life.
Personal Independence Payment (PIP) is a new benefit that is gradually replacing Disability Living Allowance (DLA).
It was introduced in Northern Ireland last year.
PIP is harder to get than DLA because it places less importance on your diagnosis.
It focuses instead on how well you can function on a a day-to-day basis.
More than 125,000 people in Northern Ireland will have to be re-assessed to see if they qualify for the new benefit.
BBC Spotlight has obtained figures that shows that over 35% of applicants seeking to transfer from DLA to PIP have had their benefits disallowed on the basis of their initial assessment.
Many of these people have gone on to apply for what is called a mandatory reconsideration.
It is the first part of the appeals process and it is where you ask the department to look at your case again.
But the programme also discovered that only 20% of those who apply for a mandatory reconsideration will have their decision changed.
Capita is the private company who won the £65m contract to deliver PIP in Northern Ireland.
Simon Matchett from Bangor had been diagnosed with Multiple Sclerosis and was getting high-rate DLA that allowed him to get a Motability car.
Following his assessment he was awarded eight points, which was not enough to keep the car and he had to return it.
Mr Matchett said when he was reading his assessment he queried a number of things that were written in it.
“That didn’t happen, I didn’t actually say that – a lot of times it could come down to a he said, she said sort of thing,” he said.
“The title is personal independence payment and by taking away my car, they were taking away my ability to have a little bit of independence.”
Mr Matchett challenged the decision based on what he claimed were inaccuracies in his report.
He was later awarded the extra two points during the mandatory reconsideration stage.
If you are unsuccessful at the mandatory reconsideration stage, you can ask for an appeal hearing during which you will present your case to a legal expert and a disability expert.
Jylette Frey-Pullan, who has muscular dystrophy and uses an electric wheelchair, was also told that she no longer qualified for a Motability car.
She said the car was her lifeline as it was able to hold her electric wheelchair and her husband was able to drive her around in it.
Mrs Frey-Pullan said she was shocked when the initial decision letter arrived.
“I thought no, this must be some kind of mistake. They can’t be talking about me, there were a lot of inaccuracies,” she said.
At a mandatory reconsideration, her request for a car was again turned down.
Like many others in the same situation, Mrs Frey-Pullan is now waiting for a date for her appeal.
Shea Ross, a tribunal representative at the Citywide Tribunal Service, has said they have seen a huge increase in demand for their services.
“No one that we speak to is happy with the assessments, usually what they say is that either their words were twisted, or that some of the things in the assessment were just fabricated.”
So far just over 1,000 people have completed the full appeals process. More than one in three have been successful.
The main concern for claimants is that what they say during their assessments is not always being represented in the final report sent to the department.
Owen McCloskey, from the Law Centre NI, said “a serious issue that we feel we have identified is the auditing of reports and potentially changes being made to the report without clients being made aware of it”.
“We are looking for copies of each version of the audit report, so before and after it has been edited,” he said.
“It may have been edited multiple times.
“We are also looking for access to the actual audit document, so where the auditor has assessed the report, they have identified quality issues and they have made recommendations for change.
“It’s important we see that actual document.”
John Duffy, the president of the Appeals Tribunal, has written to Spotlight to say that tribunal members have “expressed concerns about the auditing practices” and that he had been in contact with the department about the issue.
He added that if all information is not made available at a tribunal, people can “ask for the decision to be set aside and reheard”.
When Spotlight asked the department about this, it said arrangements were now in place to facilitate earlier versions of the report being made available.
Civil servant Paul Gray was commissioned by the government to examine how the new PIP system was working in the rest of the UK.
With PIP still in its early stages in Northern Ireland, Mr Gray thinks the project should be reviewed before it gets much further.
“Since my reviews didn’t cover Northern Ireland then, yes, I think it would be a very good idea for somebody to take a look at that,” he said.
Justin Tomlinson MP, former minister for disabled people, said PIP is a “much, much better benefit than DLA”.
“Through the introduction of personal independence payments we are getting more people accessing the higher rate of benefits,” he said.
“The PIP process is recognised to be much more thorough, much more able to identify individual challenges, it means we’re spending £3bn a year more, so more money is going to some of the most vulnerable people in society but it’s not a completed project.”
Spotlight has also been told by the Information Commissioner that they have received a number of complaints about Capita and the department and are looking into the details.
Capita said Spotlight did not provide them with enough personal information about Mr Matchett or Mrs Frey-Pullan to be able to comment on their cases.
They added that they had a robust auditing process in place to ensure a high quality of assessment and said their staff are healthcare professionals who are trained and empathetic.
In a statement the Department for Communities said:
“Whilst it is still very early days for PIP in Northern Ireland, the recently published information shows that 29% of PIP recipients are getting the highest level of benefit compared to 15% of the working-age DLA customers prior to its introduction.”
My wife tried to kill herself in March. She took an overdose – while I was watching TV in the next room. Cue, in short succession: 30 minutes of heart-stopping panic, a nerve-jangling ambulance trip to A&E, an admission to a secure mental health unit, and a longer stay recovering in a crisis house.
Acute episodes such as this can be a recurring reality for someone with a longstanding mental health condition. From her battles with depression and struggles to get out of bed in the mornings, to anxiety so overpowering that a trip on a bus triggers a blind panic, for my wife (let’s call her Bea) life is a titanic battle to stay afloat. She experiences overwhelming feelings of worthlessness, guilt and impulsive urges to self-harm that can flood her mind and distort her thinking. Socialising with friends is hard, while work in the past year has been out of the question. But she’s also incredibly smart, funny, kind and brave.
Mental health is complex, but something simple triggered Bea’s overdose: a devastating letter from a “decision-maker” at the Department for Work and Pensions (DWP), informing her that her claim for personal independence payment, a disability benefit, had been unsuccessful. She’s not the first, and won’t be the last, to experience the dismissive treatment that people with severe mental health conditions can undergo when accessing the benefits system. And PIP, as the benefit is called, is one of the worst offenders.
PIP is supposed to offset some of the extra costs of a disability. Applicants are evaluated by health workers from the private firms Atos or Capita, who forward their assessments to a DWP decision-maker – who scores you on “daily living” and “mobility” (you need at least eight points for each to qualify). Currently nearly 3 million people claim some element of PIP, and my wife expected to be one of them. As did her benefits adviser, an NHS psychiatrist and a psychologist. So, armed with a dossier of supporting medical documentation, Bea applied. That was last November. I’ve seen glaciers move faster.
The thing about accompanying someone to a PIP assessment when you have your own disability is that you’re in danger of stealing their thunder. I have cystic fibrosis, I’m undergoing a lung transplant assessment, and I’m on oxygen 24/7. Bea has a hidden disease and most people aren’t trained to recognise the signs of her inner turmoil. Which means the receptionist is staring expectantly at me, oxygen cylinder strapped to my back, rather than my wife as we approach.
The good news about my wife’s assessor is that she didn’t ask Bea why her suicide attempts hadn’t been successful – a tactic that, shockingly, several applicants have claimed their own interviewers used. The bad news was that she displayed a frostiness to put the Snow Queen to shame. Bea’s acute distress during questioning – her body rigid, lips trembling, eyes welling up – was coldly met with impatience and irritation.
Imagine admitting to a series of deeply embarrassing difficulties that you battle with on a daily basis. How, for example, venturing outside on to a bustling high street feels akin to an artillery bombardment, a barrage to your senses. Or how, on some days, your body feels so leaden and heavy you can’t even raise yourself to sit up in bed. You’d hope that they would take those difficulties seriously.
The biggest shock for Bea wasn’t that her overall PIP application was rejected, but rather the manner of that rejection: being told that her claim had been unsuccessful because, in the assessor’s opinion, she was functioning perfectly normally at the assessment – thus scoring zero points, with the pages of supporting medical evidence overlooked.
This letter struck to the very core of Bea’s difficulties. “I’ve been rejected,” she said flatly. First came disbelief, then anger, and finally a tsunami of shame. She stumbled to the bathroom and locked herself in. She went catatonic, lying on the bathroom floor in a stupor, occasionally jerking back to reality with ragged gasps of panic.
Perhaps if they had read these medical notes they might have seen how, along with a severe and complex anxiety disorder, my wife’s mental health diagnosis features a particular vulnerability towards “rejection” and “abandonment”. But in their dash to get through her case and on to the next, they did not see it – or even worse, they ignored it.
There’s nothing quite like witnessing your wife tumble through a gaping chasm, to see that there’s something rotten at the heart of a welfare assessment system. From what we experienced, the wrong people are doing the wrong assessments with the wrong tools, using incorrect assumptions. And it left me reeling: how could this happen to my wife? I discovered that her experience is just the calamitous tip of a PIP-denying iceberg.While the DWP claims it doesn’t operate quotas to save money, figures released in April, covering just six months of 2016, showed an enormous expansion in claimants receiving zero points, up to 83,000. That’s only 10,000 fewer than in the previous 12 months.
This raises huge concerns about the assessment process – especially given that, when rejected by the DWP, 65% of applicants who appeal to a tribunal get the ruling reversed. A panel of welfare experts told the work and pensions select committee earlier this year that the whole process was “inherently flawed”, with medical evidence often ignored by officials during the initial assessment.
And it gets worse. New PIP guidelines were added this year, whereby mental health claimants whose mobility is limited due to “psychological distress” are now in effect barred from gaining the mobility component. “We want to make sure we get the money to the really disabled people who need it,” George Freeman, the director of Theresa May’s policy unit, said on the subject of anxiety on BBC radio in February. Bea may not be on oxygen 24/7, as I am, but her condition – and her symptoms of acute psychological distress – can be just as disabling. Acute anxiety that leads to dissociation is a physiological response: your body shuts down.
Many MPs have concerns too: the Tory MP Peter Bone declared in a Commons debate in February that “I am fed up with seeing [constituents] who clearly should have been awarded PIP.” Bea’s outraged welfare rights adviser recalled a previous PIP rejection by letter of another client, when it was crudely stated that as the individual wasn’t rocking backwards and forwards during the assessment, there was clearly nothing wrong.
After Bea’s discharge, I found myself constantly checking on her, terrified she had taken another overdose. But one weekend when I was away, visiting my sister, it happened again. A close friend came to her aid. There’s no time for fighting the benefits system when your wife is in a psychiatric unit. When Bea was finally home once again, and felt ready, we slogged through the DWP’s internal “mandatory reconsideration” appeal stage, with help from her adviser. Here the rejection rate is 80%. Bone himself has called these reviews a complete waste of time.
After several months Bea’s appeal was looked at, and rejected out of hand. I want to thank the decision-maker who saw fit to nudge her up from a derisory zero points to an even more offensive one point. At this point it might be stating the obvious that there seems to be a PIP agenda against people with mental health difficulties, and it’s harming the most vulnerable. The government may be trumpeting how mental health needs to be invested in, but its core approach is fatally flawed. Why, for instance, is there no consideration for how anxiety disorders can be just as crippling for mobility as those requiring a walking stick?
I’ve asked Bea what she thinks. She tells me about the other people she’s met at the crisis house. How most of them are repeat visitors with an array of serious mental health conditions, and many can’t work. They’re considered ill enough by the local authorities and A&E to require supported living, but too well by the DWP to be in receipt of PIP.
She believes a lot of things could make a difference. Better-trained PIP staff would help: Bea’s assessor didn’t believe her claims, as she didn’t understand Bea’s condition. And changing some of the underlying DWP guidelines about mental illness would make a big difference, such as rolling back the recent PIP changes on mental health and the mobility component.
And of course, writing to your MP with your own experiences and difficulties: Bea had written to hers, on another government benefit called ESA, and they intervened. Our PIP complaint letter is up next. She also wanted me to write this article, despite the unwelcome attention it might bring her. I think she is very courageous.
There is another thing claimants can do: persevere. Some time after Bea’s second emphatic DWP rejection, we filed a motion to go to tribunal. Tribunals are independently assessed. They carefully read through the supporting medical notes, and they don’t have political agendas: most people who go on to appeal here win. The DWP doesn’t like to be made to look like an idiot so, lo and behold, with the full weight of a tribunal imminent, they finally had a thorough look through Bea’s case. I spoke to a DWP official on the phone who finally acknowledged my wife’s difficulties and offered an avalanche of points and an award of the daily-living component if we withdrew the appeal. I expressed my frustration at an utterly broken process. But at last Bea had her offer of PIP. That’s the difference perseverance can make.
The true measure of any civilised society is in how compassionately it treats its most vulnerable members. Judged by how PIP claimants such as Bea are being treated, ours is failing.
The Conservatives today proved once again how unimportant the post of minister for disabled people is by removing yet another incumbent before they have been in post long enough to achieve anything.
Following the high profile resignation of Priti Patel as Secretary of State for International Development, Penny Mordaunt has now been moved into her post after less than 16 months as a DWP minister.
Few claimants will mourn the passing of Mordaunt, who most will feel did nothing to fight their corner. But the fact that the government sees no need to allow any degree of continuity in the post demonstrates that the rights of disabled people are not even on their radar.
The new minister for disabled people, Sarah Newton, thus becomes the seventh occupant of the post in as many years.
Previous ministers are:
12 May 2010 – 4 September 2012 Maria Miller
4 September 2012 – 7 October 2013 Esther McVey
7 October 2013 – 15 July 2014 Mike Penning
15 July 2014 – 8 May 2015 Mark Harper
8 May 2015 – 15 July 2016 Justin Tomlinson
14 July 2016 – 9 November 2017 Penny Mordaunt
Whether Sarah Newton will last any longer than her predecessors remains to be seen.
Imagine living with a condition that is only going to get worse but being told you are going to lose the support you rely on. That’s the reality facing thousands of people as a result of the move from the disability living allowance (DLA) to personal independence payments (Pip), and it’s having a disastrous impact on people with long-term conditions such as Parkinson’s.
I started as a welfare rights adviser in 1986 and, while the situation wasn’t ideal back then, it was far better than now.
I help people appeal against Pip decisions. This year I have worked on 34 appeals, with five more pending. I have won every one so far because the process is flawed. People are being presented with barriers from start to finish, and the assessors’ knowledge of conditions is simply not good enough.
Analysis by Parkinson’s UK shows it will cost the government £3m to reassess everyone with the condition for Pip. About £1.3m of this will be spent on people previously identified as having the highest need under the DLA. With a condition such as Parkinson’s they will not have improved so to put these people through another assessment is completely unnecessary.
The new system is not working. We know that 25% of people with Parkinson’s have lost some or all of their award under Pip. One of my clients went from the highest rate under DLA to nothing – he lost his money and his car because it was said he failed to attend an appointment. In reality, he had never received the letter asking him to go. His wife was looking at cheaper houses because they couldn’t afford to stay where they were. Eventually, after medical evidence was reviewed, he was awarded the highest rate again.
But it can take nine months for an appeal to be resolved – and while payments are backdated for successful appeals, you cannot give people back the sleepless nights or repair the damage the stress has caused to their personal relationships.
People are frightened; some stop eating, while others have to repeatedly go back to their GP for extra medication because of the stress.
Another of my clients was diagnosed with Parkinson’s as a teenager. It is advanced and he struggles to walk but has managed to stay in work thanks to a supportive employer. While his wife was on maternity leave, he was reassessed from DLA to Pip, his award was reduced and he lost his Motability car. He couldn’t afford to pay the bills; how could he get to work if he couldn’t use public transport? It took months to force the Department for Work and Pensions to reassess him using the evidence we had already provided.
It’s not unusual for clients to say they don’t want to live any more; the majority have to be encouraged to appeal against decisions. The process makes people depressed and feel like they are exaggerating their condition, which in turn increases the stigma of applying for benefits. I’ve helped people from all walks of life, including pilots and former doctors.
Parkinson’s UK set up a support service for benefit applications in 2015. We have gone from a team of two to a team of five, who could easily work day and night to meet the demand for the service. I shudder to think how many people don’t know where to go for support and just give up.
They say money can’t buy happiness, but happiness is demonstrated by the people we support when their Pip claim is successful. Actually, it’s not just the money; it’s the realisation that finally someone has acknowledged they are living with a condition that has affected every area of their life and they do need the support Pip is supposed to offer.
It is time for the government to get a grip on Pip.
Sue Hutchinson is a benefits and employment adviser at Parkinson’s UK, which has launched a petition calling on the government to end reassessments for Pip
The figures were provided to the BBC Northern Ireland Spotlight programme.
PIP is paid to people aged 16 to 64 to help with extra costs they face due to ill health or disability and is gradually replacing DLA.
Just over 21,000 reassessments had been completed by the end of July 2017.
Seven thousand, seven hundred and four claimants were ‘disallowed’ after the initial PIP decision.
That is higher than the disallowance rate in Great Britain which stands at 27%.
The Department for Communities said the process was still in “very early days” with the majority of around 125,000 claimants still to be reassessed.
It added that to date the “vast majority” of claimants assessed were those who had a fixed term award or who had reported a change in their care or mobility needs after the introduction of PIP.
‘Urgent review’
The charity Advice NI said they were “shocked” by the high disallowance rate when compared to GB
Chief Executive Bob Stronge said: “The Department for Communities may say that we are at the early stages of DLA reassessment, but we have to wonder is there a problem with how the PIP system is operating in NI.
“These are significant numbers and they do not bode well. We would ask that an urgent review be carried out with a view to correcting any anomalies in our system.
“Advisers are already seeing increased demands on advice services following the introduction of PIP, so much so that PIP enquiries now represent over half of all social security enquiries dealt with by the independent advice sector. “
Northern Ireland is the region of the UK which has consistently had the highest rate of DLA claims.
DLA was commonly based on self-assessment, whereas eligibility for PIP includes a test carried out by a company on behalf of the government.
The criteria for PIP are stricter than for DLA
Money is allocated according to a points system and eligibility is kept under regular review.
Seven months after it lost a personal independence payment (PIP) court case, the DWP has begun searching for claimants who should be getting a higher award. But many claimants, especially those who previously received no award, are likely to miss out.
Safety and supervision Back in March 2017 the DWP lost a vital upper tribunal case relating to safety and supervision.
Until then, the DWP had argued that a claimant could only score points for being unsafe if harm was likely to occur on more than 50% of the occasions on which they attempted an activity.
A claimant who has epilepsy which causes seizures once or twice a week, for example, may not attempt to cook unsupervised because they know that if they have a seizure they could come to serious harm.
However, the DWP had been refusing to award points to claimants with epilepsy on these grounds, unless the claimant could show that it is ‘more likely than not’ that they would have a seizure on any given occasion when they prepare food.
This is an almost impossibly harsh test, as is shown by the thousands of claimants with epilepsy who have had their payments removed entirely on being moved from DLA to PIP.
Upper tribunal However, in March a panel of upper tribunal judges held that the decision maker should look at whether there is a real possibility that harm might occur and also at how great the harm might be. The greater the potential harm, the less likely it needs to be that it would happen on any specific occasion.
For example, someone who is deaf may be unable to hear a smoke alarm if a fire starts when they are bathing.
The risk of a fire starting on any given occasion is very small, but also very real. And the harm that might occur if the claimant was caught in the bathroom during a fire is potentially fatal. So, the risk is small but the potential harm is very great. Therefore the claimant cannot carry out the activity of washing and bathing safely unless they have supervision.
The same logic also applies to people who have epileptic seizures and need someone to keep them safe if they do.
The panel also ruled that where a claimant is at risk all the time, even if they are just sitting in a chair doing nothing, then they may also be at risk when carrying out PIP activities that do not carry any additional likelihood of harm.
So, a claimant may not be at any additional risk of harm if they have a seizure when using the toilet or taking medication, for example. But, because they are at risk whatever they are doing, then we would argue that they still reasonably require supervision during these activities because they cannot do them safely without supervision.
Seven month delay Benefits and Work updated our PIP guide within a few weeks of the upper tribunal making their decision.
It has taken the DWP a shameful seven months to update their guidance to health professionals.
In a written statement last week, Penny Mordaunt, minister for disabled people, told the Commons:
“The updated guidance will reflect binding case law following an Upper Tribunal judgment handed down on 9th March 2017 on how DWP considers a claimant to be carrying out an activity safely and whether they need supervision to do so. This will increase entitlement for a number of both new and existing claimants, largely those with conditions such as epilepsy, which affect consciousness. The Department estimates approximately 10,000 claims will benefit by £70 – £90 per week in 2022/2023.”
Benefits and Work believes that the decision should benefit not just claimants with epilepsy, but also a wide range of other conditions such as learning difficulties, dementia, heart problems or mental health conditions.
So, someone at risk of serious self-harm or at risk of committing suicide might well qualify for the enhanced rate of the daily living component, if they need someone to supervise them to keep them safe.
Someone with learning difficulties which leads to a lack of awareness of danger may also qualify.
Whether the DWP will take the same view remains to be seen.
Backdating awards Mordaunt went on to say that the DWP will be looking at existing cases to identify claimants who have missed out as a result of their failure to apply the law correctly, in order to make a backdated award:
“In the case of existing claimants the Department for Work and Pensions will undertake an exercise to go through all existing cases and identify anyone who may be entitled to more. We will then write to those people affected and all payments will be backdated to the date of the change in case law.”
However, few claimants would trust the DWP to identify all those who should receive a higher award and it would definitely be worth getting advice if you believe your case should be looked at again, especially as the DWP seem to be focussing almost exclusively on claimants with epilepsy.
If you did not receive any award of PIP at all, even though you are likely to have qualified on safety grounds, it does not appear that the DWP intend to look at your case again. You may wish to consider making a fresh claim in these circumstances.
You can download the new PIP guidance from the PIP page in the members area, or from this link.
Figures released by the DWP show that almost one in five claimants who are forced to move from disability living allowance (DLA) to personal independence payment (PIP) get no award whatsoever.
The figures were given by minister for disabled people, Penny Mordaunt, in answer to a parliamentary question.
Mordaunt revealed that up to July 2017, 649,480 DLA claimants were reassessed for PIP. Of these, 125,680 (19%) received no award at all.
The figures do not include claimants who went on to successfully challenge this decision by way of mandatory reconsideration and appeal.
The figures also do not give any information about what proportion of DLA claimants were better-off, and what proportion worse-off, under PIP.
Thousands of disabled people will be given higher benefits after winning a legal victory over the Tory government.
Ministers have been forced to rewrite Personal Independence Payment (PIP) rules following the defeat at a top-level court.
People will now get £70 to £90 a week extra backdated to the day of the Upper Tribunal, which includes a High Court judge on its panel, in March.
The government believes around 10,000 people will benefit by 2022.
The shake-up axes rules which said people can carry out tasks unsupervised if it’s “unlikely” they’ll come to harm.
Epileptic people warned the old rule left them vulnerable, because even though attacks are unlikely, they’re catastrophic when they happen.
So judges ruled the Department for Work and Pensions (DWP) should base decisions on how serious harm is, not how likely.
Epilepsy Action chief executive Philip Lee said he was “delighted”, adding: “Many people with the condition could have a seizure at any time, often without warning.
“We know the current system is not working and is failing people with epilepsy. They are more likely to be refused PIP than those with any other health condition.”
Disabilities minister Penny Mordaunt said: “These updates will help us continue to ensure people with the highest costs associated with their disability or health condition are receiving the most support.”
But the minister has risked fury by describing the tribunal as a “binding” legal judgement and deciding to follow it.
When two other Upper Tribunals said 165,000 PIP claimants should get higher benefits, just nine months ago, she defied the judgement.
A DWP source said the cases were different, because the previous tribunals – which would have cost £3.7bn by 2022 – tried to widen PIP beyond its “original policy intent”.
“For this recent judgment, we accept the policy intent was less clear,” the source said.
But Phil Reynolds of Parkinson’s UK said: “This leaves disabled people in a really confused position about what the Government might do next and what the change means for them.
“Instead of chipping away at the issue, the Government needs to undertake a thorough review of the entire assessment to ensure people get the support they need first time.”
Laura Wetherly of the MS Society added: “Any change to make assessments more accurate is a positive move, but the PIP rules are still riddled with problems.
“Realistically, the whole system needs to be reviewed.”
Scope added the “flawed assessment process” should be reviewed.
Labour Shadow Work and Pensions Secretary Debbie Abrahams said: “While we welcome any increase in support for those who need PIP, this is a drop in the ocean of the funding that the courts have ruled should rightfully go to recipients.
“The government must immediately act on all of the court judgements on PIP.”
Other changes today ensure people will rack up ‘points’ to qualify for the benefit under both categories of “communicating verbally” and “engaging with others”, even if they appear similar.
This is expected to benefit some deaf people with sign language interpreters, for example.
The rules will also ensure people with mental health issues or “sensory difficulties” are taken into account better when judging if they should receive PIP.
Jo Campion, Deputy Director of the National Deaf Children’s Society said it was “an important step in the right direction” but it was “ridiculous” that deaf people still can’t apply for PIP online.
Sorry the blog is a bit late today, I’ve had an extremely busy week and I haven’t had time to think about much else other than Universal credit. You see the campaign doesn’t end when the demo finishes and I’ve published my blog. There’s so much more that goes into it, and anyone that runs a campaign will verify that.
I haven’t been sleeping well, which doesn’t help. I’ve been suffering from bouts of insomnia lately, but I can’t grumble because at least I’m lucky enough to have a bed to sleep in, thousands haven’t.
Anyway enough about me, I’m sure that you don’t want to hear my worries but I needed to vent a tad.
I arrived slightly early, and it was cold, really cold. It was a sharp reminder that winter is here and my heart goes out to everyone who is homeless or cannot afford gas and…
Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.
Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”
She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”
Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”
The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.
The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”
The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.
Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.
Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”
Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.
Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.
Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”
“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.
Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”
The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”
The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”
In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.
In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.
In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.
Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.
O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”
Philip, 41, who has multiple mental and physical health problems – including severe anxiety and depression – knows it all too well. An injury in his 30s severely damaged his left foot and he can only move on crutches.
He medically retired as a roadsweeper in 2011 and before universal credit came in he was getting by on a patchwork of disability benefits. The titles – employment and support allowance (ESA), enhanced disability premium (EDP), and severe disability premium (SDP) – sound like government jargon, but to Philip they were his lifelines.
Under “welfare reform”, lifelines can be torn away fast: this summer, Philip moved flats across south London and found himself cross into universal credit territory. Although it will not be rolled out to ESA claimants until 2019, Philip’s change in circumstance by moving house meant he was transferred onto universal credit early. What he discovered was a reality that scores of disabled people across the UK will soon be facing: neither EDP nor SDP exist under universal credit.
Do the sums and changing to universal credit means Philip is losing £40 a week. That’s a cut of more than £2,000 a year. The result is brutal. Philip can no longer afford to eat properly. Instead, he’s skipping meals. “I’m feeling physically weaker now,” he says.
Philip no longer has enough money to pay for the taxis he needs to get to his hospital appointments. “I get very anxious on public transport and don’t feel very safe,” he explains.
The financial strain doesn’t stop there. When he moved his rent was not fully paid for three weeks. He is appealing, but is now in rent arrears of over £450.
Philip’s depression has led him to attempt suicide in the past and he tells me the transfer to universal credit has made him feel suicidal again. “I’m at my wits’ end now.”
Up to half a million disabled people like Philip and their families will be financially worse off under universal credit, according to disability charities, through the removal of the disability premiums, as well as cuts to child disability payments, which could affect 100,000 children at an annual loss of £1,000. Ask the Department for Work and Pensions (DWP) and it states that the support given by SDP is now provided through personal independence payments, (Pip) and social care from local councils, and that “transitional protection” will be available when disabled people are moved from ESA on to universal credit in 2019. But press further, and it turns out that cash-strapped local authorities have no obligation to provide support. And there is no help for disabled people like Philip who are transferred early.
And that’s not all. Under universal credit, disabled claimants will face a controversial mandatory “health and work conversation” (HWC) in which they must provide information to a work coach about what jobs they can undertake, or have their benefits sanctioned. This will mean people who are often too ill to get out of bed forced into a jobcentre meeting. The DWP says not all disabled people will be required to do a “face to face” interview in the jobcentre when it is unreasonable to expect it, but campaign group Disabled People Against Cuts tells me it has already seen a case of a woman with a life-threatening illness and insufficient mental capacity being asked to attend an HWC.
Expecting people with mental health problems, learning difficulties, or those battling illness to navigate a complex benefit system is particularly cruel – and early signs of universal credit are worrying. A study by two councils in London last week reported long delays for payments are worsening people’s anxiety and depression. Grimly, it’s also emerged that some universal credit claimants are being denied free prescriptions, as well as dental care, because of confusion about eligibility. Philip finds all this hard to talk about (the benefit system makes him anxious), but he wants to publicise what is happening to disabled people. His words should be a warning to politicians: “Universal credit is pushing people into poverty.”
A Parliamentary committee looking at cheating claims in Paralympic sports is set to hear “explosive” evidence on Tuesday, according to one witness.
MPs will discuss the classification process after a BBC investigation uncovered claims of tactics being used to cheat the system internationally.
Michael Breen, father of Paralympian Olivia, will be among the witnesses.
“I firmly believe that the evidence will be extremely powerful, one might even use the word explosive,” he said.
The BBC investigation claimed tactics such as taping up of arms, taking cold showers in trunks and even surgery to shorten limbs had been used to get into a more favourable class.
It was announced last week that the classification rules would be revised, with effect from 1 January.
Breen, whose daughter is the T38 long jump world champion, told the BBC: “There is absolutely no question that certain athletes and certain nations have and continue to manipulate the classification system, because it’s easy to manipulate. It’s not robust, it’s not fit for purpose.”
But double Paralympic gold medallist Richard Whitehead, who retained his T42 200m title at Rio 2016, questioned the claims.
“I think you’ve got a case of a disgruntled parent. I think the allegations are just not true,” he told BBC Radio 5 live.
At Tuesday’s hearing, Paralympic figures will also be asked about the culture in sports after complaints from athletes.
Investigators have discovered GB Para-swimmers were subjected to a “climate of fear”.
Who will be giving evidence?
The Digital, Culture, Media and Sport Committee has been looking at the governance of sports, including football.
On Tuesday it will hear from the following witnesses regarding allegations of “cheating, abuse and interference” within Paralympic disciplines:
11.30: Michael Breen, classification campaigner and father of Paralympian Olivia Breen
12:30 Tim Hollingsworth, chief executive officer, British Paralympic Association
Analysis
Dan Roan, BBC sports editor
After so many medals and so much acclaim in recent years, this could be a highly uncomfortable day in Westminster for British Paralympic sport.
The movement’s authorities are increasingly concerned that a number of well-known British athletes could be publicly named and shamed, accused of cheating the classification system under parliamentary privilege.
At a time when the issue of athlete welfare and the human cost of the country’s pursuit of medals is under greater scrutiny than ever, any evidence that Britain has unfairly played the system could prove very damaging.
What are the claims?
A Radio 4 File on 4 special revealed lawyers for the International Paralympic Committee (IPC) are investigating whether several athletes and coaches have deliberately exaggerated disability to boost their chance of winning.
British T37 200m sprinter Bethany Woodward handed back a relay medal she won from an event in the past four years, telling the programme the inclusion of one of her team-mates was “giving us an unfair advantage”.
As there is no suggestion the athlete has done anything wrong, the BBC has chosen not to name them.
Woodward, who won an individual silver medal at London 2012, gave up her funding and walked away from the sport, claiming she had lost faith in the way the team was selected.
‘Do I fundamentally believe that something is categorically wrong? No, I don’t. It’s not endemic,” he said.
On Friday, five-time Paralympic wheelchair racing champion Hannah Cockroft told BBC Radio 5 live “humiliating” tests involving “sickening pain” are used to determine which categories Para-athletes can compete in.
“I think my worst one was I had to have electrodes attached to my spine and then electric shocks sent up and down my legs to see which nerves worked – that pain was sickening,” said Cockroft, who holds the T34 100m, 400m and 800m world and Paralympic titles.
Cockroft, who was left with brain damage after having two cardiac arrests at birth, believes it is difficult to fool the system.
“I’ve never lined up and thought someone is a cheat or a fake because there is simply no such thing. I don’t believe that anyone could go in that room and know how to cheat their classification,” she said.
What does the IPC say?
In a statement, the International Paralympic Committee (IPC) said improved performances were due to “a new generation of high-performance Para-athletes” benefitting from “improved high performance training regimes” and “not because of improper classification”.
It added: “The IPC remains deeply concerned about the well-being and welfare of all Para-athletes, and particularly about the well-being of those athletes who have been subjected to third-party allegations of improper classification.
“Although the athletes in question never have been named publicly, the athletes in question know full well that the allegations are being directed at them. Such repeated and unfounded allegations are causing undue stress and tension to these athletes.”
The IPC Athletes’ Council chair Chelsey Gotell added: “While we appreciate that athletes may have concerns regarding classification – and we are working hard with the IPC to make the system more robust – it is important that athlete concerns are substantiated by factual evidence rather than hear-say, rumour or suspicion.”
How does the classification process work?
The World Para-athletics classification system is aimed at determining eligibility and dividing competitors into appropriate categories.
Allocation – The IPC says the aim is that each group consists of athletes who have impairments that cause roughly the same amount of activity limitation.
Category – A classification panel allocates each athlete with a sport class, although some may be classified a number of times during their career.
Numbers – Classes are given a number, and each is prefixed with either a ‘T’, which stands for ‘track’, or an ‘F’ for ‘field’.
Groups: Impairments are split into groups – for example, visually impaired athletes are in the tens (T11, T12 and T13); athletes with co-ordination impairments are in the 30s (T31-38), and T42-47 covers those with limb deficiencies. The lower the number, the more severe the impairment.
The evidence is being provided as I type. You can watch it here.
Gordon Brown has revealed in a new memoir how he feared he might completely lose his eyesight during his third year in Downing Street.
The then-prime minister, who has been blind in one eye since his teens, told how he tore a retina in the other eye.
He did not tell colleagues and tried to carry on with his cabinet duties despite not being able to see properly.
He also writes about his struggles with “touchy-feely” modern politics and what he got wrong, and right, as PM.
“When I woke up in Downing Street one Monday in September (2009), I knew something was very wrong. My vision was foggy,” writes Mr Brown in My Life, Our Times.
“That morning, I was to visit the City Academy in Hackney to speak about our education reform agenda. I kept the engagement, doing all I could to disguise the fact that I could see very little – discarding the prepared notes and speaking extemporaneously.
“Straight afterwards, I was driven to the consulting room of a prominent surgeon at the Moorfields Eye Hospital in London.”
Surgeons discovered the retina in his right eye was torn in two places.
They eventually decided not to operate, writes Mr Brown, who had lost the sight in his left eye following a teenage rugby accident.
“I am grateful that the (right) retina has held to this day and I feel lucky beyond words,” he writes.
Downing Street released a statement at the time saying there had been “no change” in Mr Brown’s eyesight and his visit to the hospital had been “part of regular checks on his eyes and this check was also fine”.
Mr Brown, who took over as prime minister from Tony Blair in June 2007, without a Labour leadership contest, also writes about his regret that he could not convince voters of the need for “radical” reforms in the aftermath of the 2008 financial crisis.
Referring to his decision to bail out the banks and co-ordinate international recovery efforts, he says: “We won the battle – to escape recession. But we lost the war – to build something better.
“I fell short in communicating my ideas. I failed to rally the nation around the necessary fiscal stimulus and my plans for radical change.
“Banking should have been transformed, our international institutions refashioned, inequality radically reversed – and if we are to be properly equipped to face the next crisis this is still the agenda we must pursue.”
Mr Brown, who lost power in the 2010 general election to a coalition government headed by Conservative leader David Cameron, also writes about his struggles with social media and personality politics.
“The modern version of ‘connecting’ seems to increasingly include a public display of emotion, with the latter – authentic or not – seen as evidence of a sincerity required for political success,” he writes.
“In a far more touchy-feely era, our leaders speak of public issues in intensely personal ways and assume they can win votes simply by telling their electors that they ‘feel their pain’.
“For me, being conspicuously demonstrative is uncomfortable.”
He says he managed to keep his two sons out of the media spotlight and resisted pressure during his time in politics to “cultivate an image that made the personal constantly public – reticence was the rule”.
He also uses the book – to be published next month – to take a swipe at social media, saying: “During my time as an MP I never mastered the capacity to leave a good impression or sculpt my public image in 140 characters.
“Now no politician can succeed without mastering social media – and yet, in it, the prime minister becomes one among millions of voices competing to be heard.”
He says he “fully understands” the need to “lighten up to get a message across” and accepts that “in the second decade of the 21st Century, a sense of personal reserve can limit the appeal and rapport of a leader”.
But he adds: “Really, to my mind, what mattered was not what I said about myself, but simply what our government could do for our country.”
Parents struggling to cope with their violent autistic children are not being properly supported by local authorities, the National Autistic Society says.
For some, a violent outburst can be a daily occurrence.
“I’m scared of him. You live on a knife edge. You don’t know what’s coming next,” Lucy Goldsworthy told the BBC’s Victoria Derbyshire programme.
She has previously been left with a split lip and bruising following her son Elliot’s violent outbursts, while her husband Ian has been left with a scratched cornea.
Twelve-year-old Elliot has autism and learning difficulties which, in his case, means he is unable to speak.
His condition requires round-the-clock care and he does not understand the effects of his actions.
Ian and Lucy say their son became violent and aggressive from the age of five.
At his current age, he is becoming increasingly difficult to control.
“If it was a toddler, having a huge tantrum, scratching and kicking you, you can manage it better,” Lucy says.
“Whereas when Elliot does it, it’s like a small man suddenly attacking you.
“He’s still only violent 5% of the time – but the consequences of that violence are getting worse and worse.”
Ian and Lucy have had to put bars across the window in Elliot’s bedroom and locks on the door to help keep him – and their other children – safe.
“You kind of get used to your child’s bedroom looking like a cell of some kind,” Ian says.
Elliot attends a special school, but the couple say they do not get enough specialist support from their local council.
“You have to get to the point where one of you is hospitalised or you’ve had to call the police out [for help to arrive],” they say.
For its part, the family’s local authority, Hertfordshire County Council, says it does provide a range of care support and is deciding if more help is needed.
One woman who wished to remain anonymous, “Sam”, says she “cried and cried” for help from her local authority to look after her teenage son.
She had hoped that one incident, which required her to have a head wound glued after he became violent, would act as a “turning point”.
“At first I got a bit of help,” she says, before claiming that the council later tried to “wash their hands” of her – providing her with 48 hours’ worth of support a year.
What services can families expect?
Assessment of the problems that may provoke challenging behaviour
A care plan outlining steps needed to manage it
Help to increase structure and minimise unpredictability
If all else fails, anti-psychotic medication can be considered
One 2011 study, of nearly 1,400 children with autism in the US, found more than half were aggressive or violent towards their families or carers.
Tim Nicholls, from the National Autistic Society, believes parents and families need more support “to help them avoid or de-escalate challenging behaviour”.
“Some examples of this would be helping them with positive behavioural strategies or respite for the young person,” he adds.
Mr Nicholls is calling on local authorities and NHS England to improve the care they provide.
“If children are not having their needs met, then they are being failed,” he says.
“We need a special educational needs and disabilities system that identifies all the needs of autistic children, then puts in place the support and the services to allow them to live the life that they and their families want to live.”
‘His nature is gentle’
Nineteen-year-old Cameron is one of 700,000 people in the UK on the autism spectrum.
He was diagnosed at the age of three.
“Sometimes you don’t know how Cameron’s going to react and it is very scary,” says his father, Doug Clements.
“The [other] children have to lock themselves in the room because they are so scared.”
At the moment, Cameron goes to a specialist centre each day.
However, life at home has become very difficult, and his parents are currently looking for a residential care home for him, run by the local authority for children and vulnerable adults, close to their own home in Surrey.
His mother, Hannah, says the family can no longer manage Cameron’s behaviour.
“It’s really upsetting, because I love him so much,” she says.
“I don’t want people to be scared of him, because his nature is gentle.
“I feel sorry for him because he’s frustrated, and he can’t tell me why or other people why.”
Hannah says in the last six years, they have had “no direction at all” from support services, but Surrey County Council said it continued to offer respite care and day support to the family.
‘Gone to bed sobbing’
NHS England says it has “set out a clear programme” for those with learning difficulties and autism to “enable more people to live in the community, with the right support, and close to home”.
However, the Local Government Association says that while “councils are working hard to make sure children with autism and other special needs get access to the support they need… they have been put in an impossible situation due to increasing demand and historic underfunding”.
Elliot Goldsworthy’s parents believe their need for support will only become greater as their son gets older.
“We’ve definitely had moments when we’ve gone to bed sobbing, and despairing at how this is our life,” says Ian.
“But you can’t wallow in it too long, because you’ve got exactly the same life the next day.”
This Commons Library briefing paper looks at the rules on reassessment of existing Employment and Support Allowance and Personal Independence Payment claimants. Starting from 29 September 2017, some ESA claimants with the most severe conditions will not have to face reassessment. All PIP claimants will however continue to be reassessed periodically.
In October 2016 the Government announced that it intended to exempt some ESA claimants with the most severe health conditions and disabilities from future reassessments.
On 29 September 2017, the Department for Work and Pensions announced the criteria for “switching off” ESA reassessments. From that date, ESA claimants in the Support Group and Universal Credit claimants with limited capability for work and work-related activity (LCWRA) attending a Work Capability Assessment will no longer need to be reassessed if they:
have a severe, lifelong disability, illness or health condition; and
are unlikely to ever be able to move into work
Claimants will be told if they will not be reassessed following their WCA.
This does not however apply to Personal Independence Payment claimants, all of whom will continue to be reassessed periodically. For the most severely disabled PIP claimants however, the interval before their claim is reviewed may be up to 10 years, and may involve a “light touch” process not requiring a further face to face assessment.
The Disability News Service (DNS) is reporting that the number of complaints about personal independence payment (PIP) assessments rose by nearly 900% in the course of a single year.
Figures obtained by MPs, and cited by DNS, show that the number of complaints went up from 142 in 2015-16 to 1,391 in 2016-17.
The number of complaints that were upheld in the same period rose from 67 to 545.
There was not a corresponding rise in the number of PIP assessments completed over the same period, suggesting either that something has changed in the way assessments are carried out or that claimants are now much more willing to make a formal complaint.
DNS have been carrying out an investigation into PIP assessments and have now heard from 250 claimants who say that their assessment reports were dishonest.
The allegations involve both Capita and Atos staff.
Virtual hearings and online hearings using ‘rapid messaging’ will become a reality for social security appeals within the next 18 months, according to HM Court and Tribunals Service (HMCTS).
Writing on their blog, they explain:
“In tribunals, people appealing social security and child benefit decisions will be able to make their application fully online, track the progress of their case by text, email or online, and, if judged appropriate, take part either in a virtual hearing, or in an online hearing with the judge able to ask questions through rapid messaging, allowing much faster decision-making in a system where delays can bring real hardship. The system will also support physical hearings for those that need them (and judges will always have discretion over the way cases should be heard).
“Similar systems will developed for other tribunals. Virtual hearings (with all parties able to attend from anywhere) are currently being technically tested for immigration and asylum case management and once testing is complete will be further developed for wider pilots, for use where judges deem it appropriate.”
HMCTS say that they will provide specialist, face-to-face help for people who cannot easily use digital services.
In an urgent, unanimous report published today, the Commons Work and Pensions Committee says Government should aim to cut the baked-in six week wait for the first payment of Universal Credit to a month:
In areas where the full service has rolled out, evidence compellingly links it to an increase in acute financial difficulty, with widespread reports of overwhelmed food banks, problem debt and steeply rising rent arrears and homelessness.
Most low-income families simply do not have the savings to see them through this extended period without resorting to desperate measures.
While increased availability of Advance Payment (AP) loans of up to half the estimated monthly award are welcome, the Committee says they are no solution to a fundamental flaw in the current design:
Universal Credit seeks to mirror the world of work, but no one in work waits six weeks for a paycheque.
The Committee calls on Government to reduce the standard waiting time for a first Universal Credit payment to one month. This would be entirely consistent with the monthly in arrears philosophy of Universal Credit.
The arguments for reducing the wait to one month are compelling:
More than half of low and middle income families have no savings, and two thirds have less than a month’s worth.
Half of people earning £10,000 or less per year are not paid monthly. Many households simply do not have the resources to get by for six weeks, or in a minority of cases far longer, without resorting to desperate measures.
The 7 waiting days at the very beginning are purely a money-saving measure. They do not mirror the world of work – as the Centre for Social Justice has pointed out, no one works the first week of a job for free – and unlike the previous, standard benefit waiting days, they also leave claimants without housing costs or child benefit for the period.
The Advance Payments put forward by Government to mitigate some of the unwelcome consequences of the current design of Universal Credit, but do nothing to address their underlying foundations.
Advance Payments are loans, repayable in addition to other deductions such as rent arrears which can be up to 40% of the standard Universal Credit allowance. This will be difficult or impossible for some claimants to afford.
Rt Hon Frank Field MP, Chair of the Committee, said:
“The baked in six week wait is cruel. No one can give us any real justification for it. Such a long wait bears no relation to anyone’s working life and the terrible hardship it has been proven to cause actually makes it more difficult for people to find work.
“It is not too late for the Government to avert a Christmas disaster. They must act now.
“This urgent recommendation, of cutting that six-week wait, is the first step from the Committee in what I hope will be a series of reports on the Government’s ailing flagship welfare policy.”
Heidi Allen MP, Member of the Committee, said:
“Despite the clear support for Universal Credit, there is cross-party recognition that the 6 week wait does not honour the original intentions of the system.
“To truly represent the world of work, the payment cycle must mirror how the majority of people are paid i.e. monthly. Universal credit will only be the success it deserves to be if it works with claimants to find work, and not against them.”
Anyone who’s watched BBC1’s Casualty over the last few weeks will know that fan favourite Connie Beauchamp has recentlybeendiagnosedwith a heart tumour. The show has not yet revealed whether the tumour is malignant but it is likely to be.
Heart tumours, malignant or not, are extremely rare. They are so rare that they are almost unheard of. They are so rare that I would never have expected to see them covered on a soap opera, even if it is set in a hospital. However, they are a possibility and they definitely need, and deserve, media coverage. Media coverage, especially coverage from a TV institution like Casualty, will make a large audience aware of this extremely rare, but extremely serious, condition.
If Connie Beauchamp’s storyline prolongs even one patient’s life through early diagnosis, it will have done something amazing. If Connie Beauchamp’s storyline makes even one family aware of the possibility of a heart tumour when someone they love shows symptoms, it will have done something great.
Casualty deserves very high praise for this unusual, unexpected and original storyline. I can’t thank them enough and will be following it with great interest.
Labour MP Jared O’Mara has quit the Commons equality committee over online homophobic comments he made before being elected to parliament.
Mr O’Mara also made misogynistic remarks, joked about having an orgy with members of Girls Aloud and posted degrading comments about fat people.
The Sheffield Hallam MP, 36, was elected in June, unseating ex-deputy prime minister Nick Clegg.
Mr O’Mara resigned from the Women and Equalities Committee after apologising.
In posts made on the Drowned in Sound music website in 2004, Mr O’Mara claimed singer Michelle McManus only won Pop Idol “because she was fat” and said it would be funny if jazz star Jamie Cullum was “sodomised with his own piano”.
‘Horrendous and vile’
The posts were first reported by the Guido Fawkes website, which has since revealed that two years earlier Mr O’Mara made homophobic remarks on an internet forum.
The MP has also apologised for these comments and said he was “deeply ashamed” of his actions.
The Labour leadership described Mr O’Mara’s online remarks as “horrendous” and “vile” but sources said he would not be suspended from the parliamentary party, BBC political correspondent Chris Mason reported.
Mr Mason said he understood Mr O’Mara addressed his colleagues at a meeting of Labour MPs and made “a full and very personal apology” for his remarks.
Lib Dem peer Lord Scriven, former leader of Sheffield Council, said: “It seems like a nasty pattern of sexist language and misogyny is developing from the Labour MP for Sheffield Hallam.
“He clearly isn’t fit to sit on the Women and Equalities Committee. He must stand down from that committee immediately and if he doesn’t, Jeremy Corbyn must take action to remove him.”
Stella Creasy, Labour MP for Walthamstow, added she had asked for a meeting with Mr O’Mara to discuss his comments.
‘Change their views’
However Wes Streeting, Labour MP for Ilford North, who was at the meeting earlier, said: “He offered what seemed to be a heartfelt and genuine apology and admitted that these are views he once held, which took guts.
“The battle for equality is a battle for hearts and minds and that must surely mean that people are allowed to change their views and therefore must also be offered a second chance.
“I hope I don’t end up eating my words and that he demonstrates his commitment to equality as a new MP. I think we owe him that chance.”
In a statement, Mr O’Mara said he had been “wrong to make” the comments.
“I understand why they are offensive and deeply apologise for my use of such unacceptable language.”
“I made the comments as a young man, at a particularly difficult time in my life, but that is no excuse.”
Before his resignation from the committee, LGBT Labour said: “Whilst we recognise that these comments were made some time ago, that doesn’t excuse such ignorance and bigotry.
“We expect a full and public apology from Mr O’Mara and ask that he meets with members of the LGBT Labour committee in order to understand the inequality many LGBT people face.”
Disabled people are “losing out” on jobs because of a government support scheme that is “no longer fit for purpose”, campaigners say.
Access to Work – which gives workplace support to disabled people – is beset by errors, with many having support cut, charity Inclusion London said.
One deaf, leading artistic director said having her funds capped would mean she could no longer work full time.
The government said it was “committed to supporting disabled people” in work.
‘It gave me confidence’
Access to Work is a government programme aimed at helping disabled people and those with physical and mental health conditions that make it difficult to work.
By providing grants – such as to help people with learning disabilities understand written information, or transport for those with physical impairments to attend meetings – it aims to enable people to find or stay in employment.
According to government figures, £103.9m was spent on the scheme in 2016-17, helping about 25,000 people across England, Scotland and Wales.
Jenny Sealey, chief executive at Graeae Theatre and co-artistic director of the London Paralympics opening ceremony, told the BBC’s Victoria Derbyshire programme she had relied on the support – which enabled her to pay for sign language interpreters – to get to the top of her field.
“Because I’ve had Access to Work I’ve become professional, I’ve learnt my trade, I’ve learnt how to cope in big meetings,” she said.
“It gave me the confidence to say, ‘I want to be co-artistic director at the Paralympics opening ceremony’.”
‘Terrified’ of the future
A 2004 government review suggested for every £1 of money spent on Access to Work, £1.48 was generated for the Treasury.
But since 2015, new claimants have had the money they can receive each year capped at 1.5 times the average salary – around £41,000.
From April 2017, this will affect existing claimants too.
The report estimates 90% of those affected by the cap will be deaf people.
Ms Sealey said having her support capped will mean no longer being able to work full time.
“[At] the thought of having to cut my hours, I can feel me – Jenny – shrinking, becoming this small person, feeling quite terrified of what my future is.
“I can’t believe this is going to happen, it makes me feel quite sick.”
The government says by capping the amount a claimant can receive, the scheme can reach as many people as possible.
Ellen Clifford, the author of a new report into the scheme for Inclusion London, said the scheme had enabled disabled people to “not only get jobs, but to have a choice of jobs – to go into the same range of professions as non-disabled people”.
One sign language interpreter said it had allowed deaf and disabled people to “smash the glass ceiling”.
But Ms Clifford said in recent years that they needed to reduce the amount of support they were getting.
“There was a noticeable increase in hostile attitudes from advisers – accusations that people were a burden on the taxpayer.”
Ms Clifford said there was also a “disproportionate impact on deaf customers”, with call centres “ill-equipped to deal with non-hearing customers”.
She added that the level of administrative errors being made was “making the scheme unworkable for people”.
One deaf woman who spoke to the programme, Geraldine O’Halloran, said her budget had been cut twice in 2017 because of administrative errors.
A spokeswoman from the Department for Work and Pensions said it was “committed to supporting disabled people to get into employment or keep their jobs.
“Last year 25,000 people had their request approved by Access to Work, an increase of 8% from 2015-16.”
On Saturday, Same Difference was proudly live Tweeting from a day conference on disability and visual art, organised by the people behind UK Disability History Month. Our Tweets are collected below.
Proud to be live Tweeting from Disability & Art day conference for @RRwoi#ukdhm
I am very sad to have heard yesterday of the recent death of Sir Bert Massie. We never met in person but were Facebook friends for some time. RIP Sir, thank you for all your hard work for disability rights before and during my lifetime, and for your Facebook friendship.
AFTER contracting polio at three months old, Sir Bert Massie spent his life fighting for discrimination against disability to be outlawed and making the world a more accessible place for wheelchair users and those with long-term physical or mental impairment.
His drive for change came from both “a personal need and an appreciation of what was wrong”.
During the 1960s he explained that he often used to go to restaurants and “people would say: ‘We don’t serve wheelchairs’.
“And I would say: ‘Well, that’s okay, I don’t eat wheelchairs’.”
It was a typically humorous response from the fiercely proud Liverpudlian but he was the first to admit life could often be a battle.
Sir Bert turned out to be a “great champion of the possible”.
He was a leading light of the Disability Discrimination Act 1995 – now replaced by the Equality Act 2010 – which makes it unlawful to discriminate against people in respect of their disabilities.
The son of Herbert and Lucy Massie, young Bert spent the first five years of his life at Liverpool’s Alder Hey Children’s Hospital.
He then moved to the Children’s School of Rest and Recovery and Sandfield Park Special School at the age of 11.
As disabled students were not expected to study for O-levels, he left school without qualifications.
Sir Bert Massie spent his life fighting for discrimination against disability to be outlawed His first job was operating a lift but having been told that he was unemployable he was concerned other wheelchair users were facing the same discrimination and joined the Liverpool Association for the Disabled.
He was unable to study for A-levels in his home city because none of the night schools had an accessible entrance.
Instead, he attended a specialist college in Coventry and returned to take a degree at Liverpool Polytechnic.
After obtaining a postgraduate diploma in social work from Manchester Polytechnic he joined the Royal Association for Disability and Rehabilitation (Radar) in London from 1978 to 1999, becoming chief executive in 1990.
Sir Bert served as chairman of the Disability Rights Commission from 2000 to 2007 and was founding commissioner of its successor, the Equality and Human Rights Commission.
He was awarded the OBE in 1984, CBE in 2000 and a knighthood for “services to disabled people” in 2007.
Ambulances were white when Damon lost his sight over 30 years ago and Lucy’s mental image of her sister, Alice, hasn’t changed since she went blind in 2013.
Having been born blind, Emma has no real interest in what colour represents.
The three blind journalists take a light-hearted look at what colour does and doesn’t mean to them with the help of token sighted person Beth.
It’s remarkable how much pressure it took to achieve this concession. Indeed, from the beginning, the response to news that universal credit claimants are being charged up to 55p a minute to call the government helpline has had an air of “let them eat cake” about it.
New figures suggest that benefit recipients could be spending over £50m a year calling the DWP helpline but until Gauke’s announcement the prime minister’s spokesman had simply stated that anyone worried about the cost could ask for a call back. Some commentators, meanwhile, point out that a call costs only 9p a minute on a landline.
That many families struggling on low incomes can’t afford to have a landline in the first place has been widely ignored (government figures show the helpline received 31.8m calls from mobiles last year). So has the fact that people relying on benefits – at the mercy of the DWP – have little power to get a government worker to call them back.
At a time when policies continue to target the most marginalised members of society, we are seeing this attitude more and more. It’s the same thinking that responds to a mum scraping by on poverty wages as a zero-hours cleaner by asking: why can’t you just get another job? Or that points to hardship payment as a solution to a Parkinson’s patient having his benefit sanctioned but ignores the fact that, without his benefits, he can’t afford the bus fare to the jobcentre to fill out the forms.
It’s inequality washed out – a version of current events told from a position of blissful ignorance. This outlook fails to recognise that the most basic things – being believed by someone in authority, or having enough change for a phone call and a meal for your kids – come from a place of privilege.
It projects the standards of that privilege on to people – the working class, ethnic minorities, benefit claimants – who have never had it. It assumes that, despite all the evidence to the contrary, the game is fair for every player. In fact, what we have is a system that pushes people into debt through a faulty benefits system and then charges them to ask for help.
The politicians cutting social security by billions have not filled out a 42-page form for a disability benefit that they need to keep the heating topped up. The media commentators downplaying concern over the UC phone charges have never been looked down at by jobcentre staff nor expected to wait for six weeks for their only income.
This is where the effects of the narrowness of the British political class – white, wealthy, non-disabled and male – come home to roost. Experiencing a situation first-hand isn’t a prerequisite for empathy, of course, and there are many diligent journalists and politicians. But overall, the disconnect is striking: the very people responsible for shaping social and economic policy in this country often have no understanding of what it is to live at the sharp end of it.
This doesn’t only lead to a failure to comprehend the impact of something like universal credit; it creates a state of disbelief around the reality experienced by certain sections of society. Disabled people, for example, have been reporting grave problems with benefit assessors for years, but it’s only this month MPs are launching an inquiry into alleged widespread dishonesty in the system.
In a different way, the mocking of Laura Pidcock MP – still going on, weeks after her comments about viewing Tories as “the enemy” – has the unpleasant undertone of rounding on the outsider; belittling a working-class, northern woman who articulated a solidarity with her community that those untouched by austerity can’t understand.
It’s in part why support for current Labour party policies, or the radical extension of universal services, is often greeted with bewilderment – despite the fact they chime with the British public’s support for greater levels of state intervention. It’s easy to dismiss hopes for change as “far-fetched” when you’ve never struggled to find your next meal or pay the rent.
The appointment of Marsha De Cordova as the new shadow disabilities minister – a former disability charity and union worker who is registered blind – is a small sign of what it means to have a representative politics: where, say, in contrast to paternalism from non-disabled ministers, someone in power can speak about the impact of disability cuts from experience. This has to be the way forward. As social security cuts, squeezed wages, and Brexit uncertainty hit, it’s the poorest and disabled citizens who are going to be in the firing line. The need for a political class that grasps the damage being done has never been greater.
A Universal Credit (UC) case manager has confessed to the Independent that DWP staff “cruelly close claims” of “tens of thousands of very vulnerable people” and that threats of suicide are a “frequent occurrence”.
The case manager, using a pseudonym, said that lack knowledge about UC regulations by DWP staff “can have an especially devastating impact on care leavers, the disabled and those with mental; health conditions”. He explained that it is often left to charities and support workers to explain the regulations to DWP case managers.
Amongst the allegations made by the claims manager:
Full-time case managers on average handle in the region of 300 claims each. As a result of the overwhelming caseload, many crucial tasks are not completed “until claimants contact us when their payments are inevitably paid incorrectly or not at all”.
If a case manager goes on holiday, their claimants are “completely neglected” as staff are told only to send out payments for people they manage themselves.
DWP staff are told that “claimants are entirely responsible for their own claim”. So the system only alerts staff after a deadline has been missed “allowing us to cruelly close claims and stop that person receiving any money. Tens of thousands of very vulnerable people have their lifeline switched off with a click.”
Claimants who state that they are facing eviction are “a penny a dozen. We are told that legal proceedings can take months so a claimant is ‘never really facing eviction’. That’s how we’re told to justify it.”
Staff are well-trained to deal with threats of suicide “simply because it’s such a frequent occurrence”.
The Commons Select Committee on Work and Pensions would like to hear from you if you have had an assessment, or are waiting for an assessment, for PIP or ESA.
So far over 500 people have posted their comments on the parliament website about their experience of PIP and ESA assessments.
We’re sure that there are many more claimants who could help Frank Field and his committee understand just how bad the system is.
The committee wants to know:
Did you feel that the right decision on your entitlement to ESA/PIP was reached as a result of your initial assessment?
If not—what do you feel were the reasons for this?
If you have experience of Mandatory Reconsideration, did you find this stage effective and useful? How might it be improved?
Overall, how “claimant-friendly” did you find the assessment process?
What steps would you recommend taking to improve it?
New details have emerged of the “climate of fear” GB Para-swimmers were subjected to by their former head coach.
Among the findings of a confidential final report obtained by BBC Sport, investigators found Rob Greenwood inappropriately disclosed an athlete’s medical information, and banned swimmers from leaving hotels “as punishment”.
Paralympians were left “visibly distressed” when recounting their experiences to the safeguarding experts looking into allegations of bullying.
It was also concluded that “there was a lack of nurturing, empathy and appreciation for athletes’ general well-being”.
The governing body released a statement summarising the findings of the investigation, but the BBC can now reveal the full details of the heavily redacted final report.
Greenwood left his job before the investigation began, and it is not known whether he disputes the allegations.
When contacted by the BBC, he declined to comment.
The report is heavily redacted to protect individuals’ identities, but the BBC can reveal one member of staff – understood to be Greenwood – was said to have:
“acted in an intimidating manner towards athletes”
“used derogatory terms to describe athletes owing to their disability”
“inappropriately disclosed medical information of a Para-swimmer”
“asked an athlete to perform a task they were unable to do due to their disability”
banned athletes from leaving hotels and confined them to a resort “as a punishment… leaving them unsupervised and unattended whilst abroad or on a training camp”.
This, despite investigators highlighting the young age of some athletes, and a “wide range of often complex medical conditions and disabilities”. The report notes many athletes had no experience of living or travelling independently.
It added that “when recounting their experiences… in the squad under the tutelage” of an unnamed member of staff – understood to be Greenwood – “a number of athletes became visibly distressed. Their recollection was vivid and the impact on them palpable”.
According to the report, “there is evidence to show that [Greenwood] used inappropriate language to describe the physical disabilities of athletes which at best is unprofessional. Treating individuals with dignity is the very least skill/quality that you would expect to find in an elite level Paralympic coach”.
It also noted that the British Athletes’ Commission, which was representing the swimmers, advised that some of the complainants would only talk to a female investigator.
Greenwood has not responded to a request for comment in light of the latest revelations.
British Swimming said last week that a second unnamed member of staff – understood to be National Performance Director Chris Furber – had been disciplined after his management and communication was criticised and found to have showed a “lack of empathy”.
British Swimming said he “acknowledged mistakes had been made” and he remains in post at the Manchester-based organisation.
He is not accused of abuse or discrimination, and when contacted by the BBC he also declined to comment.
According to the final report, Furber;
“had the benefit of previous experience in managing individuals with disability. He may have felt more accomplished in pushing the boundaries of challenging athletes and encouraged [Greenwood] to do so. Whilst that was a wholly appropriate objective the methodology was flawed”
“demonstrated a lack of empathy towards athletes, particularly if they did not perform well or were unwell”
“failed to ensure enough management control was exercised over methods of training particularly the use of ‘pressure sets'”
Furber has not responded to a request for comment in light of the latest revelations.
According to the investigators, it was suggested to them by members of staff that “the complaints made by athletes have been motivated by retribution for de-selection. In addition it is intimated that because the athletes have complained ‘en masse’ there has been an element of collusion prior to reporting their concerns”.
However the experts say they are “not minded to conclude that either of these assertions were the simple driving factor for athletes making a complaint”, making the point that several complainants remained part of the squad.
The investigators said the timing of the complaints after the Rio 2016 Paralympics “seems logical and wholly understandable”. They believed that before a Games “an athlete will mentally put aside and be prepared to endure any level of negative treatment to focus on achieving their dream”.
In March, BBC Sport revealed Britain’s Para-swimming squad – which includes some of the country’s youngest and most vulnerable athletes – had become embroiled in a bullying controversy after multiple complaints against a coach.
In February, an independent investigation into the allegations began, and 13 athletes and 10 members of staff were interviewed.
British Swimming says it has committed to a robust action plan in a bid to overhaul its culture.
Figures from police forces across the UK show there were 450 incidents reported last year, up from 181 in 2014-15, 5 live Investigates found.
Families with disabled children described being targeted online and verbally abused in the street.
The Home Office said the rise was due to better reporting and more victims willing to come forward.
‘They wished she was dead’
Bethan Germon’s 23-month-old daughter Lydia has hydrocephalus, or water on the brain, which causes her head to swell.
It means at one point Lydia’s head was double its natural size. She also has cerebral palsy and is fed through a tube.
“You see a really ugly side of people online to the point where they say they wish she was dead or why don’t we kill her,” Bethan said.
“The online commenting has easily been the worst and my husband has actually made sure that I come offline for a couple of days when things have been said.
“He really does try to protect me as much as he can.”
The 29-year-old from Swansea said that while the family was most regularly targeted through social media, abuse was also doled out in the street.
“Some of my friends have had the word cabbage used against their children.
“This isn’t unusual for us.”
A disability hate crime is defined as anything from online abuse to physical violence in which the victim was targeted because of their disability.
5 live Investigates sent Freedom of Information requests to all 45 police forces in the UK, to find out how often these incidents were happening, and 29 of them provided full responses.
Overall the number of disability hate crimes increased by 101%, from 1,531 in 2014-15, to 3,079 in 2016-17.
But the crimes against children increased at an even greater rate.
The incidents reported to police range from verbal and online abuse to arson and even violent, physical attacks.
Prosecutions rising
Amanda Batten of the Disabled Children’s Partnership said the findings echo a new survey it carried out of nearly 2,700 parents of disabled children which revealed hate crime and abuse was commonplace.
“Families often feel like they can’t go into busy public spaces or post images onto social media for fear of being publicly shamed or having to be submitted to people telling them that their child must lack quality of life because of their disability.
“The idea that so many parents and children with a disability are facing such a lack of support and outright abuse from the general public is truly heart breaking.”
The Crown Prosecution Service for England and Wales has seen year on year rises in prosecutions and convictions for disability hate crime.
A Home Office spokesman said: “All forms of hate crime are completely unacceptable and the UK has some of the strongest laws in the world to tackle it.
“Our hate crime action plan has improved the response of law enforcement and the criminal justice system to these horrendous attacks.
“We are still concerned that disability hate crime is significantly under-reported by victims, and that is why the government is working with community groups to raise awareness of how to report it amongst, disabled people, their carers and families.”
5 live Investigates: Hate Crimes against Disabled Children is broadcast on Sunday 15 October at 11:00 BST. If you missed it you can catch up on the iPlayer.
Quiet hours, reduced background noise and provision for customers to use private rooms
Staff trained on how to better understand and serve autistic customers
Information pack aims to give autistic customers and their families a preview of branch life
Nationwide Building Society is trialling autism friendly hours in branches to make the experience as comfortable and convenient as possible.
Autism is a lifelong developmental disability that affects how people perceive the world and interact with others. Designated quiet periods, reduced background noise and greater availability of office space are to be offered to create a more welcoming environment for autistic people. In addition, information about what to expect at a branch will also be sent to relevant customers so that they are prepared.
The initiative, which is being piloted in Worcestershire, is supported by the National Autistic Society and will be rolled out across the Society’s entire branch network if successful. The trial follows an extensive training programme for all frontline staff on how to support members with mental capacity needs, such as dementia through its dedicated Specialist Support Service.
In the UK around one in 100 people are on the autistic spectrum, equating to around 700,000 people and affecting some 3 million family members. And with more than 15 million members, the Society recognises many of its customers will be affected by the condition, either personally or through friends or family.
Autistic people can get overloaded by everything around them. It’s like all the senses are firing at once, like there’s no filter, like they’re getting too much information. And that makes the world a terrifying, isolating place. But it doesn’t have to be like this. Small changes can help to reduce the overload.
Taking into account the difficulties experienced by autistic people, a range of approaches will be adopted in participating branches. These include:
Publication of quiet times for each branch so there is less footfall and background noise, meaning less need to queue – something that can be an issue for someone on the autism spectrum.
Rooms will be made available in case a customer or their child find the experience overwhelming.
Noise will be reduced as much as possible for those who experience sensory overload.
Reducing fluorescent or harsh lighting as this can hurt the eyes of someone on the autism spectrum.
Training for staff to enable them to support autistic members and their families at any time, not just in the dedicated quiet periods.
While the hours are designed to support autistic members and their families, Nationwide hopes they will also be of use to other members who may prefer to conduct their banking needs at a quieter time such as those with head injuries or partial hearing loss.
Mandy Griffin, Director of Membership Propositions at Nationwide Building Society, said: “Autism is very much a hidden disability and often you will not know if someone is autistic. By making a few adjustments in our branches, we can make them a less daunting space for our autistic members and their families. We are also looking to provide more detail online to allow members to plan their visit and know what to expect when visiting a branch, something that is important to many autistic members.”
Mark Lever, Chief Executive at the National Autistic Society, said: “We are delighted that Nationwide Building Society is introducing regular autism friendly hours in its branches. We know that as many as 64% of autistic people avoid going to shops and businesses due to feeling overwhelmed by noise, environment and because staff don’t understand their autism. I am confident that many people will feel relief that Nationwide is offering this crucial initiative.
“In early October, we organised the first UK-wide week of Autism Hours with nearly 5,000 shops and businesses across the country. We hope that more organisations, including other financial services providers, will follow the example set by Nationwide and do their bit to help make sure autistic people and their families have the same opportunities as everyone else.”
Every month 60,000 ill and disabled people have their needs assessed for benefits. Some are so worried about the process that they are using mobile phones to secretly record those interviews, critics say. But using that evidence to overturn a decision is not straightforward.
In 2015, Nev Cartwright sat down with his specialist at a hospital in Leeds. He was told his hacking cough and breathing difficulties were caused by a tumour in his left lung. He was 45.
Since then he has had three operations and a lung removed. Nev was awarded the highest rate of Disability Living Allowance (DLA) – a benefit meant to pay for the extra costs of his condition.
But a year later he received a letter saying the DLA was being replaced by a new benefit, the Personal Independence Payment, and his needs would have to be reassessed by a private company.
The night before his assessment he watched a documentary which questioned how they were being conducted.
“I was really nervous about it and made the decision to audio record the interview covertly. It was a safeguard, an accurate record of what had taken place,” he says.
‘Completely altered’
The face-to-face assessment is typically an interview with a health professional, such as a nurse or paramedic, lasting between 30 and 90 minutes. It can also include basic medical tests and a physical examination.
The claimant is assessed depending on their ability to complete day-to-day tasks. That report is sent to an official at the DWP who will then decide the final level of disability benefit that person is awarded.
But things did not go as planned. Nev says he had misgivings from the start but it was only later, when he saw the assessor’s final report, that he realised something was seriously wrong.
“Some details discussed in the interview were not in the report and others were completely altered,” he says.
“She said she’d done a physical examination of my mobility. It was very evident on the audio recording, that she never did that at all.”
On his phone recording you can clearly hear the assessor carrying out a peak test to measure his lung function, and reading out the data.
But in the final report, his last reading appears to have doubled from 150 L/min to 300 L/min, making him seem better than he actually was.
“I totally agree that anyone entitled to benefits should have their needs assessed,” he says. “But everyone deserves just and fair treatment.”
Tribunal appeal
After his interview Nev had his disability payments cut and had to return the car paid for by the mobility element of his benefits.
He wrote to the DWP and told them about his recording, sending them a written transcript put together by an independent firm.
Under government rules, secret or covert recording like this is banned. If it is spotted, the claimant is told to stop. If they refuse it is likely that their benefit application will be rejected.
The government tried to get his recording thrown out before his appeal at tribunal.
But exceptionally, in his case the judge agreed a transcript could be entered into evidence. He went on to win his case and his car was eventually returned.
“I’ve wasted 12 months of my life in an unfair fight with a government department and the people who work for it,” he said.
The private company which carried out his assessment says its “high standards were not met on this occasion” and it has now changed the way it gathers evidence in cases like this.
Recording pressure
Critics of the assessment process say formal audio recording of all PIP interviews should be mandatory and available to both sides.
“It would remove the distrust and give so much transparency to everyone,” said Tony Lea, lead welfare rights officer at Benefit Resolutions, a disability advocacy service which has been campaigning for a rule change.
As things stand the official rules are complex.
A claimant does have the right to ask for a PIP interview to be formally taped and used as evidence, but unlike other disability benefits like ESA, they have to provide their own equipment.
This must be a secure, tamper-proof double recorder which can cost as much as £1,500. A mobile phone, digital recorder or dictaphone does not meet the requirements.
In March, a major independent review of the PIP system commissioned by the government recommended switching to compulsory audio recordings with an opt-out for people who do not want it.
The government says it is “considering the results” of a pilot of recording in the West Midlands.
A spokesman for the DWP said: “Anyone is free to record their face-to-face consultation, but it must be done in a way that best protects both claimants and assessors.”
Nev says his experience shows that some vulnerable people need more protection.
“I should probably be more diplomatic but I think the whole system is a mess,” he adds.
“The importance for me of getting that audio recording into evidence was the potential to help other people in the future.”
An independent inquiry into complaints of bullying made by 13 Para-swimmers found they and their families faced “unacceptable behaviours”.
In an exclusive interview, Carson Russell, whose daughter Hannah, 21, was among the athletes who complained, said it had been a “very challenging” time.
He said solutions must now be found.
“It is disappointing when you have to listen to your daughter on the end of the phone who is upset and fearful at the way she’s being managed, and that is a big concern,” he told BBC Sport’s Patrick Nathanson.
“I am aware that other families have been through a lot of turmoil, a lot of distress over the last two or three years. It’s very challenging for parents and athletes who might be in a new environment for them so they’re unsure what best practice looks like.
“As a parent, you want you child to be in a rewarding environment, that’s how you get the best out of athletes – but if they’re pushed too far, that can slide away, and I believe that’s what’s happened, and that then did become a climate of fear that people couldn’t operate in properly.”
British swimming’s governing body said an unnamed member of staff – understood to be former head coach Rob Greenwood – was found to have been “communicating with athletes in an abusive manner, as well as using derogatory terms to describe athletes”.
Greenwood left his job before the investigation began, and it is not known whether he disputes the allegations.
When contacted by the BBC, he declined to comment.
A second unnamed member of staff – understood to be national performance director Chris Furber – whose management and communication was criticised and was found to have showed a “lack of empathy” has faced disciplinary action, but remains in post at the Manchester-based organisation.
He is not accused of abuse or discrimination. When contacted by the BBC he declined to comment.
“In the pursuit of excellence, we recognise there have been failings in the culture and communication within British Para-swimming” said Maurice Watkins, chairman of the national governing body.
‘The most important thing is to find solutions’
Carson Russell said striving for medals must be balanced with the welfare and safety of athletes.
“The pursuit of medals is integral to athletes getting up every day, driving themselves forward – it’s what elite sport is all about,” he said.
“Getting that balance right is really important, but you can strive for world-class performances in an environment where you are looking after athletes and their welfare comes first.”
He acknowledged British Swimming had carried out a “thorough investigation” and added it was “right and good that they have made some recommendations”.
He said: “The important thing is you have to be careful of throwing sticks and highlighting problems all the time. The most important thing is to find solutions.
“There are some recommendations, but the caveat to that is that those have to be delivered.”
Russell said his daughter was willing to “draw a line in the sand” and was focused on securing a place at the Tokyo 2020 Paralympics.
“Unfortunately for my daughter she did have to cope with stresses and things that weren’t great for her,” he said. “But becoming a resilient athlete, being able to bounce back, that’s part of elite sport as well.
“What’s gone has gone, let’s make sure we learn from that.
“There’s some new people and coaches involved in British Para-swimming and she’s working with them. Her focus is purely on Tokyo 2020 and what she needs to do to try and get selected for that.”
I’m standing in line waiting to get into a nightclub, bumping shoulders with people who are already having a good time. As I reach the front, a bouncer looks me up and down. Without a word, he places his hand on my shoulder and pushes me forward. I’m pinballed from security guard to security guard, fully expecting to be led directly into the club. Instead, I’m guided out of the queue, confused as to why I now find myself standing behind the metal barriers.
“What’s going on?” I mean, I’ve had a few drinks but I’m certainly not drunk.
He asks me to blow into a breathalyser, and we wait a few moments. All clear.
“Are you OK?” he asks me plainly.
“Yes?”
Why wouldn’t I be? And then the penny drops. The first bouncer must have thought I was off-my-face drunk, simply because my eyes weren’t looking in one particular direction.
The thing is, I’m visually impaired, but I don’t necessarily need a cane. What follows is my desperate vomit of different terms for blindness, trying to prove my innocence.
“I’m visually impaired? Legally blind? I’m registered blind … Jesus! I can’t see properly!”
But it is all too late. A fun night out had been soured by one tiny assumption and a judge and jury who had decided to put me on trial because I didn’t look them in the eye.
This isn’t the first time this has happened and it certainly won’t be the last. But given that today is World Sight Day, I thought I’d shine a light on what people with vision impairments go through on a daily basis.
Blindness and visual impairments are severely misunderstood. What people presume is that if you’re blind, you can’t see anything and you’re either going to be relying on a dog or swinging a stick about. If you’ve got neither … then hey, you’re not blind.
This is entirely incorrect. People who are registered blind are statistically more likely to be partially sighted than completely blind. In reality, only a very small portion of people have no sight at all. Despite this, awareness regarding legal blindness is practically non-existent. Two million people are registered blind or partially sighted in the UK and, shocking as it is, we are actually able to participate in society.
According to a report by the Royal National Institute for the Blind (RNIB) almost half of blind and partially sighted people feel moderately or completely cut off from people or things around them, leading to a marked rise in the risk of depression among people with sight loss. That’s why the ignorance surrounding vision impairments needs to be addressed. If a night out is a way for a visually impaired person to enjoy themselves, shutting them out because they don’t carry a stick is a sure way to keep us cut off from society.
There often seems to be a misconception that the only thing blind people do is … be blind. We don’t just sit at home decked out in our blind garb, hovelled up in our pyjamas and dropping curry down our shirts. It’s detrimental to our overall identity to assume that if a vision-impaired person says that they’re going to work, they must be going to the RNIB. People with varying capabilities of sight are able to lead lives that don’t revolve around blindness. Yes, we might have keen interests in issues surrounding blindness or want to rally around in support, but that doesn’t mean we don’t want to get out to a nightclub now and again. It’s not only able-bodied people who can have fun.
I can appreciate that it’s difficult to really know a person’s situation, but making face-value assumptions, whether they’re a product of society or not, isn’t going to help anyone. We do exist in the outside world, even if we aren’t holding a cane. Like most things, blindness exists on a scale and what you know about one blind person certainly isn’t going to apply to another.
Ben Stokes has apologised to Katie Price and her disabled son Harvey for a video that showed the England player imitating a TV clip of the youngster.
The apology came on the same day Stokes lost personal sponsor New Balance following his recent arrest over an incident near a Bristol nightclub.
The video emerged following his arrest in September. TV personality Price has called Stokes’ behaviour “disgusting”.
“I foolishly attempted to copy the clip,” Stokes tweeted on Wednesday.
“I should never have done this and I am so sorry.”
The 26-year-old England all-rounder and Test vice-captain added: “It was absolutely not my intention to offend Harvey, Katie or anybody else.
“I have written to both Harvey and Katie to say sorry and prior to this offered to meet in person at the end of last month with a view to also getting behind their petition about online bullying. I do hope I can put this right.”
British Swimming has apologised to Paralympic athletes after it was found that a former head coach “created a climate of fear”.
It said an independent inquiry into complaints of bullying from 13 Para-swimmers found they and their families faced “unacceptable behaviours”.
The governing body said the unnamed member of staff – understood to be ex-head coach Rob Greenwood – was found to have been “communicating with athletes in an abusive manner, as well as using derogatory terms to describe athletes”.
Greenwood left his job before the investigation began, and it is not known whether he disputes the allegations.
When contacted by the BBC he declined to comment.
A second member of staff, whose management and communication was criticised and who “acknowledged mistakes”, has faced disciplinary action, but remains in post at the Manchester-based organisation.
“In the pursuit of excellence, we recognise there have been failings in the culture and communication within British Para-swimming” said the national governing body’s chairman Maurice Watkins.
Under Greenwood’s leadership, the country’s Para-swimmers became the most successful British team at last year’s Rio Paralympics, winning 47 medals – including 16 golds – and setting eight world records. Greenwood took up the position in 2013 and was named Sport Coach UK’s ‘High Performance Coach of the Year’ in 2016.
The programme received £11m of public funding from UK Sport in the four-year cycle leading up to the Rio Games.
‘We were left broken-hearted’
One of the athletes who represented ParalympicsGB in Rio and who made a complaint, wanted to remain anonymous but told BBC Sport: “It’s good that it has now been recognised, but it also feels as if nothing has really happened. I don’t have much confidence things will really change.
She says that she saw athletes being “screamed at” and “verbally abused and bullied” and “swimmers broken-hearted, crying their eyes out, and completely destroyed as a result of what had been said to them”.
“These members of staff would talk down to the swimmers, make us feel pathetic and useless. We were traumatised and belittled. It began a year before Rio and carried on constantly,” she added.
“I didn’t suffer as much as some of the others. We won plenty of medals, but they took it too far. If we’d had less pressure and stress and targets, we’d have been happier and won even more.”
BBC Sport has learned that the situation was deemed so serious that athletes were offered free therapy at the request of the British Athletes’ Commission, to help them deal with the strain of the investigation.
Background
In March, BBC Sport revealed that Britain’s Para-swimming squad – which includes some of the country’s youngest and most vulnerable athletes – had become embroiled in a bullying controversy after multiple complaints against a coach.
British Swimming says that “after an initial investigation by a law firm concluded there was prima facie evidence which warranted further inquiries, the matter was referred by the British Athletes Commission (BAC) to the governing body in December 2016”.
In February, an independent investigation into the allegations was launched, and 13 athletes and 10 members of staff were interviewed.
‘Climate of fear’
“As regards the one member of staff who has left, it was found that he had created a climate of fear for some athletes in the British Para-swimming programme and there had also been breaches of the staff code by communicating with athletes in an abusive manner, as well as using derogatory terms to describe athletes,” British Swimming said.
“As for the second member of staff, it was found that athletes were not managed to the appropriate level, there was failure to ensure management control and lack of empathy was shown towards athletes.
“Communication with both athletes and their parents/guardians was also found to need improvement. The member of staff acknowledged mistakes had been made.”
Apology
“On behalf of British Swimming I want to apologise to the athletes and their families who have faced unacceptable behaviours and comments” said Watkins.
“I have written to those athletes and their families who I understand have been affected by this.
“In the pursuit of excellence, we recognise there have been failings in the culture and communication within British Para-swimming. We are correcting that, recognising the need to ensure strong athlete welfare in our sport.”
British Swimming says it has committed to “a robust action plan… to make sure transparent procedures are followed and adhered to… and a closer working relationship with the BAC.”
It said it is reviewing the staff code of conduct, safeguarding policies and the whistleblowing policy “to ensure they continue to be fit for purpose and widely communicated”.
“Our goal continues to be medal-producing performances, consistent with medal targets, in a positive culture,” it said.
Athlete welfare in the spotlight
With a third of governing bodies having been drawn into athlete welfare complaints in recent months, this latest scandal will heighten fears that medal success and UK Sport’s ‘no-compromise’ funding strategy has come at the expense of duty of care.
In June, a report into claims of bullying at British Cycling found a lack of good governance, heard there was “a culture of fear” and criticised UK Sport for missing crucial warning signs.
BBC Sport revealed a senior coach working with Great Britain’s Winter Olympic bobsleigh squad has been accused of racism amid multiple complaints over a “toxic atmosphere” in the sport.
The BBC also revealed that police had reopened an investigation into a senior Archery GB coach having been suspended following a complaint to police over an alleged incident involving a young female Para-athlete.
UK Sport meanwhile has promised a “root and branch review” of culture in high-performance programmes, and appointed a new head of integrity, with chair Dame Katherine Grainger saying that athlete welfare is “a huge concern”.
‘Cultural failings’
Tim Hollingsworth, chief executive of the British Paralympic Association, said: “The health and wellbeing of athletes and indeed those involved in sport at any level is always of paramount importance.
“There is no place in Paralympic sport for the kind of cultural failings detailed in this independent report for British Swimming and we commend the governing body for their response to it and the action plan they have initiated.
“ParalympicsGB athletes are some of the most inspiring role models in public life and there are no circumstances in which this kind of conduct is acceptable.
“We would encourage athletes to challenge this behaviour wherever and whenever it arises and – as is happening across the system – all organisations and governing bodies to look at their culture and their processes to make sure they are as good as they can be and should be.”
Eleven-time Paralympic gold medallist Baroness Grey-Thompson, who has conducted a major government-commissioned report into duty of care in sport, said: “It should never be underestimated how hard it was for those on the programme to step forward and raise their concerns.
“As we’ve seen across a number of sports, the culture and system is not protecting its athletes in the way it should.
“Once again this shows that duty of care has to be a high priority within any sport pathway. It has to be at the heart of every programme. I don’t believe providing this support will be detrimental to the aspirations of any team. I hope the governing body will be able to create a positive environment around the squad for the future.”
The criteria that the DWP are using to decide which claimants will no longer have to have repeat work capability assessments (WCAs) in order to continue receiving employment and support allowance (ESA) or universal credit have now been published. They show that many claimants with mental health conditions will not be considered, even though they are in the support group.
Substantial risk Last week the government announced that claimants who have to attend a WCA from 29 September 2017 will not have to have repeat assessments if they meet certain, at that time undisclosed, criteria.
However, Disability Rights UK, who took part in the consultation on the changes, have published copies of the guidance on their website.
The documents make it clear that claimants who are placed in the support group because their mental health condition means that there would be a substantial risk to themselves or someone else if they were not placed there, will not be considered for exemption from further medicals.
This is in spite of the fact that the substantial risk regulations are a very common ground for claimants with mental health conditions being placed in the support group.
Detailed criteria Instead, claimants can only be considered if they are in the support group because of one of the “functional descriptors” due to either a physical or mental health condition. These are are:
Mobilising 50m
Transfer independently
Reaching
Picking up and/or moving
Manual dexterity
Making yourself understood
Understanding communication
Weekly incontinence
Learning tasks
Awareness of hazards
Personal actions
Coping with change
Engaging socially
Appropriateness of behaviour
Unable to eat / drink / chew / swallow / convey food or drink
Claimants will also need to show that all of the following apply:
Their condition will last for the rest of their lives.
The effect of their condition means that they will always meet at least one of the support group descriptors above. The DWP say that conditions which might qualify, include: “Motor Neurone Disease (MND), severe and progressive forms of MS, Parkinson’s, all dementias, all chromosomal conditions, Huntington’s, severe irreversible cardiorespiratory failure, severe acquired brain injury …this list is not exhaustive” . The DWP also say that conditions which might not meet the criteriainclude “recently diagnosed relapsing non-progressive forms of MS or some people with less severe mental health conditions with periods of reasonable function”.
There is no realistic prospect of recovery, such as a transplant.
They have been diagnosed with an unambiguous medically recognised condition. This can include conditions such as ME/CFS and fibromyalgia.
No appeal A health professional will make a recommendation as to whether a claimant meets the criteria for being exempt from further WCAs. A DWP decision make will make the final decision.
There is no right of appeal against a decision not to exempt a claimant from further WCAs
A press release, that we publish with this discussion , on how sex robots can help disabled people, in mind. Thoughts welcome, as always.
Dennis Hof, owner of the Moonlite Bunny Ranch and six other legal brothels throughout the state of Nevada, has announced that he is exploring and embracing advances in sex technology that could lead to sexbots available at the Bunny Ranch as early as 2019, working side by side with human sex workers.
“I’ve always been an innovator in the sex space,” Hof said. “When I took legal prostitution out of the shadows and into the limelight with my reality TV series Cathouse, and reimagined Nevada’s legal brothels as lavish sex tourism destinations for men, women, and couples from all walks of life, I changed the culture of legal prostitution for the better, and was very successful doing it.”
“The next great innovations in our industry will not only be cultural, but also technological,” Hof said. “Sex robots are here to stay, and the technology is further along than most people think. I want the Bunny Ranch to be a testbed for this cutting edge sex tech — and if our clients like them, Bunny-Bots will be a part of the experience offered at my brothels going into the next decade.”
If the technology continues to advance at the current rate, Hof says that the robots available at the Bunny Ranch could be more than merely amped-up sex toys.
“The companies I’m in discussions with are constantly perfecting their sex robots to be the most physically satisfying sex partners on the market, but it’s the advancements they’ve made in Artificial Intelligence that may truly change the game in the upcoming decades,” Hof said.
“The ‘Girlfriend Experience,’ where a client and sex worker share conversation and intimacy in addition to great sex, is the most requested session at the Bunny Ranch,” Hof said. “A few tech companies are already experimenting with artificially intelligent and interactive sex robot applications, so upcoming generations of sex robots just might be able to connect with Bunny Ranch clients on this intimate level and satisfy the emotional needs of brothel customers.”
Some working girls at the Bunny Ranch disagree with Hof’s assessment.
“It’s insulting,” says Tiara Tae, a popular working girl at the Bunny Ranch who dislikes the idea of introducing the newest technology into the world’s oldest profession.
“You can’t program a robot to sympathize with every client’s unique psychological situation or to sense what a customer subconsciously needs sexually and emotionally. The experience we offer is not a simulation of intimacy and empathy, it’s genuine.”
“I’m not thrilled about the prospect of sharing the stage with an appliance,” Tae said. “It’s challenging enough competing with dozens of other working girls, now I have to compete with the Terminator too?”
Tae believes that introducing sex robots into brothels may cause working girls to go on strike.
“We have never gone on strike before, but I can see working girls standing up against sex robot ‘automation’ of our very human industry if this happens,” Tae said.
Not all sex workers at Hof’s brothels are opposed to the idea of sex robots joining the Bunny Ranch lineup. Alice Little, the top earner of Hof’s pool of over 500 working girls, has a different perspective.
“I don’t see sex robots as my competition, as much as a tool that I can use to augment my client’s experience.” Little said.
“We work with a lot of adult virgins with extreme levels of shyness and very limited sexual experience,” Little said. “Many of these virgins are very nervous when they’re with a woman for the first time, and could benefit from having a transitional sexbot to ease them into intercourse with a human woman.”
“Also, how cool would it be to have a threesome with a robot!” Little said.
Currently, Hof splits all revenue 50/50 with the working girls at the Bunny Ranch, so the financial advantage of having non-human sex workers “on staff” are not lost on the brothel owner.
“We’re still in the early stages of estimating the potential financial impact of robo-prostitution,” Hof said. “But if the future unfolds as we expect, sex robots may do for the Bunny Ranch what the iPhone did for Apple.”
This report from Disability Campaigner Gail Ward is a must read for all benefit claimants and those claiming ‘in work’ benefits claimed by millions in the UK. It has plenty of references and downloads contained within the document and it will alarm many, it should, as this government is targeting the poorest in society at the expense of saving the rich. Some of those already transferred will know the horrors already highlighted recently by Citizens Advice (CAB),but the majority do not. This blog doesn’t have the capacity to embed the entire report to enable reading online ,but you can download it from the link below in the hope that this will help many prepare for the next onslaught by this barbaric government whose sole purpose is to hound claimants, and save money for the state putting profit before people. If you thought WCA (ESA) was bad this will make it…
They’re talked about a lot at the moment, but can “sex robots” help disabled people?
Also on this BBC Ouch show, the disabled teen punk who left home to find an independent life for herself in the less-accessible 80s. And the action movie where sign language is a super-power.
A press release, published slightly late, but the programme is still available on Iplayer.
In a first for the Edinburgh Fringe Festival, BBC Ouch! brought together seven performers with disabilities or mental health difficulties to share their most awkward momentswith a live Festival audience.
The night’s performances can be seen tonight in a 30 minute special featuring four of the acts on BBC News Channel at 2130. An hour-long version featuring all seven performers is available now on BBC iPlayer.
BBC Ouch! provided a platform for the performers to share stories about the moments that have made them laugh and cringe. Featuring a mix of professionals and non-professionals – some of whom had never performed before – the show gives a frank and sometimes darkly comic glimpse into the day-to-day reality of living with a disability or mental health difficulty.
Ouch! Storytelling Live: Awkward Moments was compered by London-based Danish comedian Sofie Hagen and headlined by Lost Voice Guy Lee Ridley, who has cerebral palsy and speaks through a computer.
Among the acts performing personal monologues were: Frank Burton, who uses Al Pacino film titles to stop his seizures; Angela Clarke, whose easily-popping bones made for a less-than-relaxing spa experience; and Abbi Brown, a wheelchair user, who enjoys shocking nuns with a rather unusual party trick!
The Ouch! team were inundated with auditions from aspiring raconteurs with a disability and a funny story to tell after they sent out an open call on social media for people to be part of the show. The team struggled to narrow the line-up down to the final six who joined headliner Lee Ridley, and say they’ve got lots of good stories left over that could find their way into future shows.
This event was BBC Ouch!’s first Edinburgh Fringe comedy outing and followed a successful forerunner, in which another group of performers took over a London comedy club to talk hilariously about sex and relationships.
Sofie Hagen hosted both nights and says:
“This show features real people talking honestly about their lives, allowing us all to hear stories from people who are so rarely represented – it’s an incredible show to be a part of. If this show existed when I was a teenager who experienced severe depression, it would have made me feel less alone and more understood and that is priceless.”
Damon Rose, Editor of Ouch, says:
“Storytelling nights have become quite popular and I’ve always thought that having disabled people or people with mental health difficulties at the front, under the spotlight, engaging with the crowd, and telling their own unfiltered stories puts everybody on a level. I find it very engaging and authentic. What we found is that our contributors don’t tend to use the regular clichés of braveness, inspiration and ‘see the person not the disability’. They avoid the spin and worthiness and like to represent themselves in many different ways. We see the people, we hear their stories and it all seems more three dimensional.”
DAWN Charitable Trust cordially invites you to join us in celebration of its Silver Jubilee Gala at Winston Churchill Hall, Pinn Way, Ruislip, HA4 7QL, on 15th October 2017 from 3:00 pm with a colourful programme of classical and folk dances, Bollywood songs, drama and a Rang-e-Mehfil followed by a raffle and dinner.
DAWN is a mental health and social wellbeing support charity formed with a mission to alleviate isolation, poverty and distress in society.
More information on our work and engagement with the community can be found by visiting our website: www.dawncharitabletrust.com; Facebook: dawn community trust; Twitter: yakeendawn.
Although our main focus has been on catering to the needs of ethnic minorities – particularly Asian women, we are open to all faiths, backgrounds and genders and do indeed have clients from the wider community accessing our services.
Tickets may be reserved by calling Dawn on 020 8427 6706 and picked up from our office or at the reception desk at the venue. Payment can be made online on: Dawn Project Account: No: 47364696; Sort Code: 60-10-10.
I couldn’t believe that Thursday had arrived so quickly. I had spent all week covering the Conservative Party Conference and to say that I was tired is an understatement, but people still need help.
I was met at the cafe by a lady that we had helped a while ago. Her life is back on track now and she is doing well. She likes to come and have a chat with me, and I like it to. I regard her as a friend and we sat and put the world to rights.
I arrived at the Jobcentre and set everything up. Thank goodness I wasn’t on my own this week, last week was awful. People soon arrived, arriving at the Jobcentre for appointments many needing food parcels.
The weather is getting cold now, although it wasn’t raining. My thoughts go out to everyone living on the streets.
Johnathan Cavendish has produced Breathe, the beautiful, true love story of a polio survivor and his wife. The couple are Cavendish’s own parents, Robin and Diana. Cavendish himself described the project as a ‘labour of love’ in his introduction to a screening in central London, as part of the London Film Festival 2017.
Robin Cavendish, (Andrew Garfield) the central character, is a strikingly normal young man who loves playing sport. During a game of cricket he spots Diana (Claire Foy.) Love at first sight leads to marriage. He takes her to live a life of luxury in Kenya, where he is a tea broker.
Romance, humour and even a pinch of feminism follow as much to the surprise of Robin’s many friends, Diana accompanies him on his trips to ‘broke’ tea and claims to want to know about his business- something women in 1950s Africa clearly didn’t do. As one wife puts it “God gave men jobs to do so women could have a little time to themselves.”
Fittingly, life changes for Cavendish while he is playing sport. He collapses soon after losing a set of tennis to a friend for the first time ever. He keeps calm, carries on and laughs it off, saying only “Now I know how it has felt to be you all these years!”
However, that night, no one is laughing when he ends up in hospital, paralysed irreversibly by polio. After the birth of their baby, Johnathan, the Cavendishes return to England, where Robin is given a tragic life expectancy of a few months and told to spend it on a hospital ward for polio patients. There he meets fellow patient and lifelong friend, Paddy.
With the support of an understanding doctor, Robin leaves the hospital and goes home to Diana and Johnathan. He spends the rest of his life on a ventilator, but with the love and support of his family and his many true friends, he lives a full life.
He helps design a wheelchair which has his ventilator attached to it, and becomes an activist for the rights of severely disabled people. To the shock of doctors, he even eventually gets Paddy and some other patients out of the hospital.
The wheelchair helps him travel the world- to Spain with his family, where the ventilator breaks down in the middle of nowhere and Robin reacts with characteristic humour, sending a friend to phone the chair’s inventor and requesting that he bring back food and wine- and to Germany, where he visits a chilling polio hospital and gives a very moving speech about why he chose to live, even when he wanted to die.
Diana’s true love for her husband is never in doubt, even when, at the end, he decides it is time for him to die. She movingly says “Never, ever, say you did it for me.” In his final moments, she movingly thanks him for choosing to live for as long as he did.
As a hopeless romantic who has been disabled by Cerebral Palsy since birth, I love movies that show their audiences that disabled people can stay in love after becoming disabled. However, my lifelong disability also means that I am personally strongly against Assisted Suicide. So, while I loved Breathe and would recommend it to anyone who enjoys a good love story, I would have loved it even more, and recommended it more highly, if Robin Cavendish had only chosen to live a little longer, until his life ended naturally.
Last month we revealed that repeat WCAs – the assessment system that decides eligibility for employment and support allowance (ESA) – were at their highest ever level and now outnumber WCAs for new claims.
However, the DWP have now announced that from 29 September some claimants who have to undergo a WCA may be told that they will be exempt from any further repeat assessments.
This only applies to claimants who are in the support group of ESA or who have limited capability for work-related activity for UC.
You will also have to have a severe, lifelong disability, illness or health condition.
And you must be unlikely to ever be able to move into work.
DWP minister David Gauke claimed in a speech yesterday that:
“After early tests of this approach, it has now been implemented and I can tell you that around twice as many people are expected to benefit from this reform than were originally thought.”
Unfortunately, as yet, we have no idea of how many people they originally thought would benefit.
Nor has the DWP made public the guidance – if any exists – that health professionals will be using to help them decide whether to recommend exemption from repeat assessments.
But you can be sure we’re trying to get hold of it.
MANY THANKS TO BENEFITS AND WORK FOR THIS.
Created: 03 October 2017The sanctions rate for universal credit (UC) claimants is three times higher than it is for jobseekers allowance (JSA) claimants, according to the latest report by sanctions expert Dr David Webster of the University of Glasgow.
According to a review of benefits sanctions statistics published last month by Dr Webster, the sanctions rate for JSA claimants is 2.5% per month. But for UC the rate rockets to 7.4% per month.
The rate for employment and support allowance (ESA) sanctions is much lower, at 0.32% per month.
However, the length of ESA sanctions is very concerning.
25% of ESA sanctions lasted for more than 3 months. And a shocking 16% of sick and disabled ESA claimants were sanctioned for more than 6 months, a rate that is far higher than for UC according to Dr Webster. The harshness of…
Video games can get a pretty raw deal in the news. At worst, we see stories claiming links between playing violent games and some of the worst aspects of humanity, or that games are robbing children of time spent in nature. At best, we hear news stories where games are regarded with a certain distain; something to be smirked at, and not taken seriously. But these sorts of stories completely miss the varied, rich and nuanced experiences that playing games can afford.
But playing video games isn’t always a trivial endeavour. For many children and adults with disabilities, simply being able to pick up a controller and coordinate fine motor movements can be a difficult, even impossible task. SpecialEffect is a charity based in Oxfordshire that tries to help people get back into the game.
‘I’m a parent of a young child who’s been helped by the charity. I know as a parent there are situations where you can’t play real games with your kids, but you can play video games, so confidence, self-esteem, all those kinds of things are really helped’ says Nick Streeter. Nick is part of the team that’s on a massive fundraising push for the charity today. One Special Day sees the likes of mobile developers like Rovio and Super Cell, and other games houses like EA and Sega donating 100% of their UK profits today to SpecialEffect. The charity’s hope is to raise over £100,000 to go towards the costs of sending specialist healthcare professionals across the country to assess gamers for their needs.
‘The money raised is to keep our services going and recruit more people,’ explains Nick. ‘It puts petrol in our cars to go out and visit people – say, a gamer in Cumbria with a spinal injury. It keeps the door open for them.’ The kinds of equipment that SpecialEffect supply can be anything from a simple switch, to a full eye-tracking system that can cost thousands of pounds. The equipment allows people to manipulate games controllers through ways other than using their hands – it might mean a chin-operated joystick controller, or action buttons that can be pressed using shoulder movements. A key aspect about the charity is that it isn’t about just dropping kit off for people and leaving them to it – instead, the team provides lifelong support. ‘The kit is given out on a long-term loan, and we support people for as long as they need’ explains Nick.
One Special Day is now in its second year. The idea originally came about through conversations with a mobile developer. ‘He said, “I’ve seen what ICAP [a hedge fund] do – on one day a year, they donate all of their worldwide profits to charity. You know what, why can’t the games industry do the same?”’ says Nick. The games development community has been amazingly supportive – over 30 companies are donating their UK profits today, the association for UK interactive entertainment (UKIE) are organising bake sales and Marioke events, and Twitch is hosting a livestream from 2pm, where some of the gamers will be using the technology that SpecialEffect supply to showcase how it works, and how easy it is to use.
SpecialEffect isn’t a campaigning charity – they’re simply acknowledging that gaming is a big part of culture and people’s lives, and trying to help people who want to play get back into it. ‘For kids who can’t go and have a kickaround with a ball outside, it means they can play FIFA and do really well,’ says Nick. ‘It’s a really positive thing, it’s about quality of life.’
So for today only, any in-game purchases made in games supporting the event will go straight to the charity. You can find a list of the supporting developers here. I asked Nick what the plans were for the future of One Special Day. ‘We’re going to take stock afterwards, and see how things went,’ he explains. ‘But for me, we need to find a way to thank people properly – gamers, livestreamers, developers – and show them what actual difference their money is making.’
In the last Parliament the Committee held an urgent one-off evidence session in the wake of the announcement of Government plans to restrict the number of people who qualify for PIP, a move which would limit the cost of PIP by £3.7 billion. Evidence taken then revealed worrying disparities between the applicants’ recall of the assessment process and the final report produced to enable DWP to make a decision. The Committee also heard concerns about the contractor assessors’ ability to understand and properly assess a wide range of physical and mental health conditions, and about the dignity and conduct of the assessment process. The latest data shows that claimants are successful in appealing against their decision in 65% of cases, for both PIP and ESA, and that there has been an 29% increase in such appeals being registered since this time last year.
Given high ratesof overturn at appeal, the Committee invites evidence on the effectiveness of assessment processes used to determine eligibility for these benefits, and the experience of applicants going through it. The Committee is interested in receiving recommendations for change both on the assessment process for each benefit individually, and on common lessons that can be learned from the two processes.
Frank Field MP, Chair of the Committee, said: “The truly amazing rate of overturned ESA and PIP decisions seems to point to something being fundamentally wrong with the initial assessment and Mandatory Reconsideration stages. Quite apart from the human cost this represents – the distress and difficulty for applicants trying to get help with daily living or getting into work – it looks to be wasteful, inefficient, and a huge cost to taxpayers.
“We would like to hear from claimants – and assessors – about whether and where the system works, or is failing, and how it might be fixed.”
In particular, the Committee would welcome evidence on the following points, by 10 November 2017:
Assessors and assessments:
Do contractor assessors possess sufficient expertise to carry out assessments for people with a wide range of health conditions?
Is DWP quality control for contractors sufficient and effective?
Should the options for reforming the Work Capability Assessment mooted in the Government’s Improving Lives green paper be taken forward?
What examples of best practice in assessing eligibility for benefits are available internationally, and how transferrable are they to ESA and/or PIP?
Mandatory Reconsideration and appeal:
Why do claimants seek to overturn initial assessment outcomes for ESA and/or PIP?
Why are levels of disputed decisions higher for PIP than for ESA?
Is the MR process working well for claimants of ESA and/or PIP?
What accounts for the rate of overturned decisions at appeal for PIP and/or ESA?
Are there lessons that could be learned from the ESA MR and appeal process for PIP and vice-versa?
What changes could be made earlier in the process to ensure fewer claimants feel they need to appeal?
Claimant experiences:
Do prospective claimants currently understand the purpose of the assessment?
How could claimants be helped to better understand the assessment process?
Are some groups of claimants particularly likely to encounter problems with their assessments – and if so, how can this be addressed?
Should the assessment processes for PIP and ESA be more closely integrated? How else might the processes be streamlined for claimants?
An easy read version of these terms of reference is available on our website, and we encourage people to join the discussion on our web forum, whether you would like to submit evidence to the inquiry or not. /ENDS
Drake Music, a charity which helps disabled people access music, developed a customised airharp, which enabled Hannah to play an instrument for the first time.
“It’s surreal to think that someone like me can play,” said Hannah.
“People just look and see a lot of physical barriers they can’t see beyond that.
“I like to do what’s not expected of me as a disabled young woman.”
A benefits assessor who was caught on film mocking disabled claimants of personal independence payments and suggesting they were liars has been found guilty of misconduct by a professional standards tribunal.
Alan Barham, a paramedic who carried out PIP assessments for Capita in Northampton, brought his profession into disrepute and undermined public confidence in the integrity of the PIP assessment process, a health and care professions disciplinary panel found.
It issued a five-year caution order, meaning any prospective employer will have access to details of the case on an online professional register for that period.
Barham was covertly filmed by a Channel 4 undercover journalist. Footage showed him boasting that he would largely complete assessment forms before meeting the claimant, and afterwards would often disregard the evidence they gave during their assessment.
He told the reporter he would “completely dismiss” claimants’ explanations for why they needed disability benefit, and rely instead on his own “informal observations” to “catch them out”.
The disciplinary panel said his comments about catching out claimants “portrayed him as holding the view that many claimants were liars, which was totally at odds with an independent assessment process into whether a claim was valid or not”.
Barham also mocked a disabled claimant, telling the undercover reporter that her disability was “being fat”.
“She asks for help to wipe her arse because she’s too fucking fat to do it herself,” he said.
The Health and Care Professions Council summoned Barham to the tribunal after several members of the public filed complaints about his conduct following the broadcast of the Channel 4 Dispatches programme in April 2016.
PIP assessments, which determine a claimant’s eligibility for financial help, have proved controversial. Critics argue that the process is crude and inaccurate, and many assessors are not properly qualified. About 65% of appeals against a PIP assessment decision are successful.
Formerly known as disability living allowance, PIP is awarded to help people with the extra costs of living with a disability or chronic ill health. It is worth between £22 and £141.10 a week, depending on the severity of the condition.
In coming to a verdict of misconduct, the disciplinary panel said: “The impact of [Barham’s] portrayal in the programme was that the public saw a disability assessor who lacked empathy and respect for the vulnerable claimants he was assessing, and who did not act in their best interests.
“In the panel’s view, it is paramount that the public is able to trust the integrity of the PIP assessment process. Individual claimants as well as the general public need to have confidence that the disability assessors carry out the PIP assessments in a fair and sensitive manner, respecting the dignity of the claimants and having regard to the sensitive nature of the personal and medical information provided.”
Barham told the panel that at the time he was filmed by Dispatches, he had become arrogant and big-headed. He had been lauded by Capita for the high percentage of excellent reports he produced and was well paid. He had allowed all this to “go to his head”.
He joined Capita in 2014 after 11 years in the ambulance service as an emergency medical technician and paramedic. He was dismissed by Capita after the programme aired.
The panel said that although Barham’s behaviour was not sufficient to warrant being struck off the professional register, and this was an isolated incident for which he had shown remorse, taking no action would have sent out the wrong message to the public.
Although the caution order will not prevent Barham from practising as a paramedic, the panel said it did not regard it as a lenient sanction, because it would negatively affect his employability and reputation.
Just over a year ago Lesley and Neal Davison received a phone call telling them their daughter was about to be sectioned.
She’d tried to kill herself.
For years Megan had been keeping a secret. She had an eating disorder. But she hid it so well, nobody in her family ever realised.
On 4 August, aged 27, she hanged herself and left a six-page suicide note.
Megan had diabulimia.
The term refers to the combined impact of type 1 diabetes with an eating disorder.
The condition is not yet medically recognised.
“She left us a very detailed note and she felt there was no hope for her, that there was nothing in place to help people with her condition,” her mum Lesley tells Newsbeat.
“In the absence of the help she needed, she couldn’t see any way of carrying on.”
Type 1 diabetes is an irreversible autoimmune disease which requires constant care.
Every time a patient eats carbohydrates they must also inject insulin.
They must check their blood sugar levels frequently. People with type 1 diabetes need insulin to stay alive.
Diabulimia refers to diabetic people who deliberately take too little insulin in order to lose weight.
Doing this can be incredibly dangerous.
“The one thing that not taking your insulin does, is you lose weight – you have an ideal tool,” explains Lesley.
She says that “Megan sometimes looked a bit thin but there was never anything that would indicate anything extreme”.
Experts say there are potentially thousands like Megan who are seemingly living a “normal” life but hiding their illness.
The leading type 1 diabetes charity JDRF estimates 60,000 15 to 30-year-olds are living with T1 in the UK.
Professor Khalida Ismail is lead psychiatrist for diabetes at King’s Health Partners, London.
“You can look quite well and have a normal body size,” she tells Newsbeat.
“And yet because you’re restricting insulin, you are running very high blood sugars and you are increasing your risk of diabetes complications.”
She explains that this can include damage to the eyes, kidneys and nerve endings.
After Megan’s death her family found there was an “inner circle” who knew more about her illness, including three friends and her boyfriend of six years.
“Like the loyal boyfriend, I was sworn to secrecy,” Andy tells Newsbeat.
In her note Megan talks of her treatment in an eating disorder inpatient unit.
She describes managing her own insulin because “not one member of staff on the ward was even trained to administer insulin let alone understand it”.
“They gave me back my insulin because they couldn’t figure out the doses.
“It’s the equivalent of giving an alcoholic vodka or giving a bulimic a bottle of laxatives.”
Her parents want Megan’s story to be known to help other families.
“The information they’re getting is just wrong for them,” says Lesley.
“It might be the best that’s available for the moment but it isn’t anywhere near good enough.”
She adds that Megan “needed something that was specific” to the condition and “not a sort of ad hoc of pieces that didn’t really do the job”.
DWED (Diabetics With Eating Disorders) campaigns for the omission of insulin for weight loss to be recognised as a mental illness.
Founder Jacqueline Allan says diabulimia is still not viewed in the right way.
“The second you stop taking your insulin you’re in the same amount of danger, regardless of your weight.”
Prof Ismail agrees and says psychiatrists need to “wake up” to diabulimia.
“The condition is very hidden,” she says. “Diabetes teams don’t know how to talk to patients about it.
“Eating disorder teams only see the extreme cases.”
She wants diabulimia to be recognised formally.
“Once psychiatrists start talking about it, debating it, awareness will grow.”
Megan’s dad Neal says they knew so little they would have been in “no-man’s land” without the letter.
“I honestly don’t know how we would have coped with it.”
“She didn’t want us upset,” adds Lesley. “And yet you end up devastated because nobody has been able to help her.”
Tim Kendall, NHS England’s national clinical director for mental health, tells Newsbeat that “people are waking up to it”.
“I was involved in producing the NICE guidelines on eating disorders and we devoted a whole section on how you manage people who’ve got diabetes and an eating disorder.
“We’re now disseminating that around the country. We have been asleep, no doubt, but we are waking up.”
NHS England says it’s integrating psychological services with physical health, including placing 3,000 new mental health therapists in GP practices.
Slightly later than we thought, Same Difference has returned. There will be light posting for the next three days and full service will resume from Monday.
Readers, Same Difference must take a break for a short time. We will return with light posting from 21st September and full service will resume from 25th September.
Join Eleanor Oldroyd as she visits Belgian wheelchair racer Marieke Vervoort in Brussels for a second time. Eleanor talks to Marieke about her health, finds out what she has been up to, and what happened when Marieke discussed euthanasia with journalist and wheelchair user, Mik Scarlet.
The Winter Paralympics begin in South Korea on 8 March, 2018.
The IPC will conduct another review in November after the World Anti-Doping Agency (Wada) Foundation board meeting and two scenarios are possible.
The ban could be lifted, in which case Russian athletes who have qualified would be free to compete for their country at the 2018 Games, or the ban could be continued.
In the case of the ban being continued – it would be up to the newly elected IPC governing board, with a new president to be elected on Friday, to decide whether select athletes could compete at the Winter Paralympics as neutral athletes.
In the interim period, Russian athletes can compete as neutrals in qualification events across four sports – alpine skiing, biathlon, cross-country skiing and snowboard.
In December 2016, the IPC created an independent taskforce which has set the Russian Paralympic Committee (RPC) a number of conditions that must be met before their athletes can return to competitive disability sport events run by the IPC.
In an update to the IPC governing board on Sunday, 3 September, the taskforce highlighted that seven key measures still need to be met before it is able to recommend the reinstatement of the RPC.
The seven key measures are:
The finalisation of the RPC Anti-Doping Rules, to be approved by the taskforce.
The approval of the RPC’s constitution by the IPC membership department.
Completion of all budget-related aspects of the reinstatement criteria.
The provision and confirmation of certain additional information by the RPC regarding personnel and governance (reinstatement criteria 10 and 14.2), as specified by the taskforce.
The provision of further information relating to the composition of the RPC board, to be defined by the taskforce (reinstatement criterion 12).
The full reinstatement of the Russian Anti-Doping Agency (Rusada) by the World Anti-Doping Agency (Wada).
The provision of an official response specifically and adequately addressing the findings made by Professor McLaren.
Outgoing IPC president Sir Philip Craven said both the IPC governing board and IPC taskforce were “impressed and encouraged” by the progress the Russian Paralympic Committee had made in meeting the reinstatement criteria since May.
But the chair of the IPC taskforce, Andy Parkinson added that there were still “major concerns” regarding the provision of an official response from the Russian authorities that adequately addresses the findings in the initial McLaren report.
Lottie Dolls becomes the first global toy brand to back the viral #ToyLikeMe campaign with the release of the world’s first fashion doll with a cochlear implant!
“There are 150 million deaf and disabled children worldwide who have been waiting for positive toy box representation. Thanks to Lottie dolls, change is finally coming,” says #ToyLikeMe founder Rebecca Atkinson who
wears hearing aids herself. “When I was growing up in the 80s, I never saw any deaf characters in toys, books or on TV. What does this say to kids? This Mia doll is my childhood dream come true. I’m so happy, I’m like a kid at Christmas! I hope it will help many deaf children grow positive self esteem to see their experiences included by the mainstream toy industry.”
The Lottie Mia photographer doll has a body based on an average nine-year-old girl. She doesn’t wear makeup, high heels or jewellery, but she does have long glossy hair to style, a cool camera and a COCHLEAR IMPLANT! The
groundbreaking doll has been created in response to the #ToyLikeMe campaign and is the first to carry the official
Loved by #ToyLikeMe endorsement.
Psychologist Dr Sian Jones from Goldsmiths, University of London has studied the effects of playing with toys with disabilities on the attitudes of non-disabled children and has found that, as well has helping grow positive self esteem for deaf and disabled children, toys like the Lottie Mia doll can help non-disabled children grow more open minds too. Interviewing hundreds of children, she found that after playing with toys like the Mia doll, children were more open to forming friendships with peers with disability and difference.
“This kind of incidental toy box representation from a brand like Lottie speaks volumes about inclusion,” says Atkinson, “It can really help change the attitudes of a generation.”
The DWP has lost its fight at the upper tribunal to prevent employment and support allowance (ESA) claimants going to appeal where the claimant is late applying for a mandatory reconsideration. The decision will also apply to all other social security benefits.
There is a one month time limit to apply for a mandatory reconsideration. The DWP can extend this time limit up to a total of 13 months where they judge that the claimant had good cause to be late.
For example, the claimant may have a mental health condition which made it difficult for them to deal with official correspondence and have been unable to get help until too late.
The DWP have been refusing to allow claimants access to the tribunal service where they are outside the one month time limit for mandatory reconsiderations. By refusing to issue a mandatory reconsideration notice the DWP can effectively block any appeal.
This means that the DWP can be completely arbitrary and unfair in decisions about whether a claimant has good cause and the claimant has no way of challenging this.
Two claimants who had initially been refused a mandatory reconsideration challenged the refusal to prevent them appealing to a tribunal and began proceedings for judicial review. At this point the DWP backed down and allowed their cases to proceed.
However, a panel of three upper tribunal judges held that the initial refusal was absolutely wrong and that claimants should have a right to apply to a tribunal, even when the DWP considers they have no good cause for their late request. It will then be for the tribunal to decide whether to allow the appeal to go ahead.
The DWP is fighting to prevent disclosure of a report that shows how well Maximus is managing to carry out its work capability assessment contract, for fear it would damage the company’s reputation.
A request for a copy of the outcome report, which would give a breakdown of Maximus’ performance at each assessment centre has been ordered to be released by the Information Commissioner.
However, the DWP are refusing to publish it and are now taking the case to an information tribunal.
The report goes all the way back to 2011, covering the performance of both Atos and Maximus.
The DWP claim that if the information was published it could ‘give a perception of under-performance’ which could ‘damage the reputation and standing of the companies involved’.
The DWP are thus claiming that the data is exempt from disclosure because publishing it could damage the commercial interests of both Maximus and Atos, as well as the DWP itself.
We’ll keep readers posted about the result of the information tribunal hearing.
HMRC is pursuing providers for six years of wages after the government reversed its decision that “sleep-in support” – where carers are present overnight but rarely called upon – is exempt from minimum pay legislation.
It means all organisations – from Mencap at one end of the scale to family-led businesses at the other, which together provide sleep-in support care for 178,000 people with learning disabilities – are at risk of insolvency, the charity says.
Enforcement action to claim the money deemed to be owed was stayed in July after pleas from providers, but it is due to resume on 2 October.
Mencap says the sector will be thrown into chaos if that happens without a government commitment to cover the back-pay bill.
Derek Lewis, the charity’s chair, said: “There would be, for a substantial period of time, chaos in the sector and the people who would suffer are people with learning disabilities, their families who would be subjected to great stress and the staff who care for them, many of whom would become redundant.”
When the national minimum wage – since replaced by the “national living wage” for workers over 24 – was introduced in 1999, time spent asleep by care workers in such circumstances was exempted in government guidance.
Instead workers were paid a flat on-call allowance, only being paid the minimum wage if their services were required during night. But after two individuals won employment tribunals claiming they were entitled to the minimum wage for the entire night, the government changed its advice saying the legislation did apply to sleep-in support.
Such care is commissioned and paid for by local authorities but HMRC has gone after the providers for the back payments with councils unwilling to foot the bill.
Mencap, one of the largest providers of sleep-in care, says it faces a £20m bill for the past six years, which will exhaust its reserves of £19.6m.
“Funding back pay would require highly damaging actions to sell assets, cut programmes and cancel investment,” Lewis said.
“Our plans to improve the lives of those with learning disabilities could be set back by a decade or more, as we struggle to repair the financial damage that would be caused by this liability.”
He said most of the reserves come from donors who did not envisage their money being used for such a purpose and would likely be put off giving in the future.
Mencap’s chief executive, Jan Tregelles, described it as “the worst crisis in our 70 years” and warned that it was the NHS “already about to face one of its toughest winters, that will have to pick-up the pieces”.
Celebrities including Jodie Whittaker, Joanna Lumley and Kit Harrington have joined the charity’s campaign for the government to intervene.
Research suggests the cost to the sector could total £400m. Smaller providers that are not incorporated could even face having to make back payments out of their own pockets. Many are unwilling to speak openly for fear of drawing HMRC’s attention.
One chief executive of a medium-sized provider in the West Midlands, said the organisation employs 300 people, delivering 1,100 hours of support and 27 sleep-ins every day.
He estimates its back-pay liability to be £1.5m compared with reserves of £1.4m, which include two care homes. “We would have to stop trading straight away, our contracts with local authorities would be toxic,” he said.
A Department of Health spokesman referred the Guardian to a previous statement by the Department for Business, Energy and Industrial Strategy, which said the government has “worked closely with the sector in response to concerns”.
The DWP is refusing to release training materials which would potentially highlight difference between the way that Atos and Capita carry out PIP assessments, Benefits and Work can reveal.
Back in June Benefits and Work made a Freedom of Information Act request for training and guidance materials issued by Atos to staff carrying out PIP assessments.
The detailed guidance covers issues such as the way in which requests for the recording of PIP assessments are dealt with.
However, the DWP refused to release the guidance on the grounds that it was commercially confidential.
We asked the DWP to reconsider their decision, because these are not commercially confidential matters and there is a strong public interest in knowing how the PIP system is administered on a day-to-day basis.
If there is a difference in the PIP is manged by different companies, then this is also a strong matter of public interest as claimants ought to be able to be sure that their assessment is a standardised one and not one based on which company carries it out.
The DWP, however, have once again refused to release the documents because they consider them to be commercially sensitive.
The DWP told us:
“Release of this information would reveal to their competitors commercially sensitive information which would disadvantage IAS’s [Independent Assessment Service, the name that Atos now use] competitive position in the marketplace.
“This in turn would prejudice the ability of the Department to secure best value for the taxpayer when the contract is re-tendered. Release of this type of key financial information would also undermine the effectiveness of the Department’s future dealings with IAS or other service providers.”
The DWP now routinely refuses a large proportion of freedom of information requests on the grounds of commercial confidentiality, without attempting to justify in any way how anyone’s interests would be threatened.
Benefits and Work is now applying to the Information Commissioner to have the documents disclosed. We’ll let you know what their decision is.
Almost one in three claimants with multiple sclerosis (MS) who were getting the higher rate of the mobility component of disability living allowance (DLA) have had their award reduced after being forced to claim personal independence payment (PIP).
The figures were obtained by the MS Society, which also discovered that almost a quarter claimants with MS who were getting the higher rate of the care component of DLA had their award reduced after being assessed for PIP.
Genevieve Edwards, of the MS Society said:
“These staggering figures show how PIP is failing some people with MS who need the highest level of support.
“It doesn’t make sense that people are losing money they once qualified for, when they are living with a progressive condition.”
Same Difference just heard of Dean Eastmond yesterday, but we were so inspired that we just had to share some tributes.
Tributes have poured in for “inspirational” LGBT journalist Dean Eastmond following his death from cancer aged 21.
The editor of HISKIND documented his battle with Ewing’s Sarcoma, a rare form of bone and soft tissue cancer, openly and frankly in articles, interviews and on social media.
Following his diagnosis, he wrote in a HISKIND article: “I was diagnosed with soft tissue cancer in my rib (Ewing’s Sarcoma) after getting myself an Uber to the closest A&E thinking I had a broken rib after a large lump the size of a grapefruit appeared on the right hand side of my chest.
“Fickle and naive, being told there and then that this wasn’t a broken rib, but a cyst or a tumour saw a terrified Dean breaking down in the A&E waiting area, unable to decide whether to call his boyfriend or mother first.
“After a needle biopsy, I was diagnosed,” he added.
The much-loved British writer was overwhelmed with support in his last few months, with Nicole Scherzinger sending him a special video message.
Following his death, numerous fellow journalists and fans took to social media to pay tribute.
Author and Labour activist Owen Jones wrote: “RIP Dean Eastmond, an amazing, courageous, inspirational queer young journalist who has died of cancer. He moved so, so many people.”
He added: “He was so incredible, he moved so many people, he achieved so much, and he’ll be remembered forever.”
Radio host Philip Ellis said: “@deanvictorr achieved more in just a handful of years than most of us do in a lifetime and I will forever be in awe of him.”
The Royal Vauxhall Tavern, one of London’s most iconic LGBT venues, tweeted: “Saddened to hear that Dean Eastmond has passed away – he was an inspiring and brave person. We send our condolences to his friends & family.”
BBC journalist Ben Hunte added: “Devastated to hear @deanvictorr has passed away. I know that his AMAZING work will live on, but he will be so missed.”
Guardian journalist Chris Godfrey wrote: “You were an absolute hero @deanvictorr and an inspiring figure to so many. Grateful to have had the pleasure of knowing you.”
It was March 2011 when the coalition government announced proposals to reform England’s special educational needs (SEN) system. Some of the initial noise around their plans was grim: government sources said as many as 450,000 children could be taken out of the category of special needs altogether, while the dependably sensitive Mail Online ran such headlines as “Schools on a scam and an excuse for lazy teaching”. At the same time, ministers made contrasting pledges, many of which I heard first-hand – not least the promises to make things “stronger and simpler” for parents and children.
But from the start, the changes were plagued by confusion, slipshod administration and the effects of austerity. SEN is inevitably a niche area of policy, but there is a big story here, of one of the David Cameron era’s most howling disasters, and an iron law of modern government: that to try to revolutionise a system in the midst of swingeing cuts is to invite chaos and failure.
My 10-year-old son is autistic. Before he started primary school, my partner and I began the journey to getting him a statement of special educational needs, which would set out the support he required in detail, and gave us a legally backed means of securing it. Throughout the process, I was painfully aware of how it favoured people with the money and time to pursue their case, and cut out many more for whom the SEN system was an impossible maze.
As with so many parents, our initial request for our local authority to begin the process of getting a statement was turned down – which entailed probably the most stressful experience I have ever had: months of legal argy-bargy, stop-start negotiation with our local authority and the frequent fear that we were about to hit a brick wall. Even with some of the correct arrangements in place, it took two attempts to get our son’s provision right, but with the help of two brilliantly supportive local schools, by the time he was nine, we were able to stop fighting and worrying, at least for the time being. He is now making real progress, both educationally and socially.
In our case, the announcement that the SEN system was to be overhauled triggered a deep ambivalence. The system had just about worked for us, and the prospect of its reinvention often seemed like yet another obstacle we would have to climb over. On the plus side, statements were to be phased out in favour of so-called education, health and care (EHC) plans – ours, we’re told, is on the way – which would go beyond education to cover health and social care, and run up to the age of 25. But the means of holding the providers of these services to account were unclear. Pilot schemes ran late. And it soon became apparent that amid cuts and the shrinking of local authority education departments thanks to Michael Gove’s academies and free schools drive during his time as education minister, councils were in no position to roll the changes out.
Five years on, it looks as if the already-difficult lives of parents and children in need of support have been made even more trying. Getting a halfway satisfactory EHC plan seems to be as difficult as securing a dependable statement. SEN insiders say councils are using the transition to plans to cut entitlements, often by changing specified provision (for example, weekly speech therapy) to much fuzzier commitments: the word “regular”, which can often mean almost nothing at all, is a favourite.
According to Melinda Nettleton, the lawyer whose book Special Needs and Legal Entitlement is something of a set text for people fighting their way through the SEN jungle, many councils are insisting parents try at least three terms of non-statutory provision before they apply for a plan: something that has no basis in legislation, and in many cases, means months of failure before any meaningful improvements can even begin. She also highlights the serial absurdities of SEN funding: schools are now meant to spend up to £6,000 a pupil each year on SEN support – but it is part of the Kafkaesque thinking at work that this figure is “notional” and can sometimes translate into as little as £200.
Self-evidently, tumbling school budgets are compounding the pain. Many authorities have long had a policy of pushing parents away from statements and plans towards their own non-statutory arrangements, so as to keep costs down.
One example was Devon county council, which involved hundreds of families in an ad hoc system called My Plan, with no formal legal entitlements. In a particularly cruel turn, the council announced at the end of this year’s summer term that it would be drastically cutting back this provision, and leaving schools and parents to apply for individual EHC plans. It is not hard to see what this move threatens to result in: even more children being left with little or no provision at all.
Across England, the same story is glaringly clear: one failed regime being chaotically replaced by another, and all that initial hype dwindling into meaninglessness. The promise of a stronger and simpler system looks set to result in the exact opposite: a set of arrangements that are weak, absurdly complex and full of the same old trapdoors. The upshot, needless to say, will be tragic: dashed hopes, ruined lives, and a great ocean of educational potential left ignored.
Two years ago, Ben Johnson, then aged nine, suffered a mental breakdown after years of difficulties at home and at school. His mother, Sonia Johnson, says he had deep anxiety and refused to go to school. From the first year of his schooling, she says, she had requested extra support, but the school did not offer the assistance she believed he needed. “I was made to feel I was hysterical and attention-seeking just for asking for support for my son’s needs,” she says.
The crisis brought things to a head. Ben’s GP signed him off. He has not been to school since.
His doctors – a psychiatrist, a paediatrician, a neurologist and his GP – had said he needed extra assistance at school. Ben was on medication for attention deficit hyperactivity disorder and had a diagnosis of autism, as well as paralysis to one side of his body because of a congenital brain problem. The headteacher, though, said Ben did not display enough difficulties to warrant the extra help his mother was calling for. Johnson felt the school’s response was “brutal”. But Ben did not have the vital document from his local authority that would help.
Since September 2014, the passport to receiving any extra services is no longer the “statement” of special educational needs (SEN) but an education, health and care (EHC) plan, intended to bring together a child’s education, health and social care needs. As under the previous system, pupils are not automatically entitled to be assessed. But now delays in the system are causing extra distress.
The Johnson family’s experience seems all too common. As council budgets and school funding have been cut, families of children with special needs increasingly find they have to battle for help – a fight some do not win.
Anyone can request an assessment, but local authorities can refuse if they believe a required threshold of needs has not been met. And councils are refusing more requests. According to Department for Education figures, there was a 35% increase between 2015 and 2016 in the number of local authority refusals to carry out EHC needs assessments on children. And for those who did get an assessment, in just over 40% of cases, the family had to wait longer than the 20 weeks cut-off date by which a decision whether to approve an EHC plan should be made, as councils struggle to do their job with the funding they have.
Even families who do get a plan still may not be given the services needed. More than 4,000 children in England with an approved EHC plan still receive no provision. The number of children and young people who are waiting more than doubled from 1,710 in 2016 to 4,050 in 2017 – and that figure is more than five times bigger than in 2010.
In Ben’s case, his mother says she was promised his school would refer him for an EHC plan, but teachers subsequently maintained he was managing. Three years later, in despair at Ben’s worsening physical and mental state, Johnson requested an EHC needs assessment herself. The council refused. She said she would appeal, but agreed to mediation first. As soon as the mediation meeting started, the assessment was agreed. Ben’s EHC plan was finally approved in February, but the document was received by his mother only in July – two years after her application.
Ben now has an out-of-school tutor and his mother says a range of professionals agree he may never be able to return to mainstream education because of all the negative experiences. “It’s been a really tough journey for the family. I feel that hopefully we’ve come over a really large mountain,” says Johnson. “I’m still worried for his future, and desperately sad and angry to see the damage caused.”
Figures from 2015 showed that when families challenged their local authority refusal to grant an EHC plan at a tribunal, 86% of council decisions were overturned. But the strain and cost of preparing a tribunal case mean many families cannot even try. One parent who talked to the Guardian spent £15,000 to employ a barrister, only for her local authority to cave in a week before the hearing. “It seemed a criminal waste of time and money,” she says.
Parents also worry that schools don’t have an incentive to offer enough help because a child with special needs is, bluntly, an expensive line on a headteacher’s spreadsheet. If an EHC plan is granted, schools must meet the first £6,000 cost of any extra support. This comes out of their overall budget.
Adding to the pressures, since the Children and Families Act (2014) local authorities have been landed with effectively limitless liability for SEN: as a matter of equality, because students with SEN need longer to learn, legislation now says they may be entitled to educational support until the age of 25 – five to six years longer than before. Local authorities say they have received no funding for this.
David Ellis, chief executive of National Star College in Gloucestershire, says that when it comes to children over the age of 16, councils are reluctant to pay for specialist provision such as that offered by his college, because of the cost, even when there is nothing suitable locally. This means young people are often forced repeatedly to fail at local colleges that do not meet their needs, he says. “There is a central government solution, which is to recognise that not everyone who needs an EHC plan can have a local solution. There are only three or four high needs students per local authority per year. For those students, you need national centres of excellence.”
Decisions all seem to be about funding, says Barney Angliss, a former local authority commissioner, now an SEN and disability consultant who advises parents. “Councils are wrestling with the cost of everything, and they are saying we simply have to balance the books. … If you talk to parents, they will say we want a decision that is needs-led. If you talk to local authorities, they say they are on their knees because of special needs. It is breaking them. Their core argument is that they don’t get the money from Westminster to be able to do it.”
Richard Watts, chair of the Local Government Association’s children and young people board, says councils have been put in an impossible position. He says the LGA warned the government from the outset that the SEN reforms in the Children and Families Act were significantly underfunded.
The LGA also says mainstream schools are becoming wary of taking children with SEN, even if their needs could reasonably be supported. “If we’re to make sure that all children get access to a mainstream education, the government must urgently provide additional funding,” says Watts.
Mia Appley, whose seven-year-old son, Sam, has autism and problems with speech and communication, says it’s wrong that local authorities are driven by controlling costs rather than what is right for young people. “If you want anything more than the absolute minimum they force you to fight for it.” When her local authority had to cut costs, it withdrew Sam’s language therapy support, Appley says, and was able to do so because at that point he had no EHC plan.
When Sam’s EHC plan came through, within hours of the 20-week deadline, it emerged that professionals’ recommendations for the type of therapies he needed had been ignored in favour of a standard “autism package”. “I had to go to mediation and then apply to tribunal,” says Appley. Her local authority capitulated weeks before the deadline requiring tribunal papers to be lodged.
Over time, the anxiety experienced by parents such as Appley and Johnson is debilitating. “I think what they do is make it so hard that lots of people give up,” says Johnson.
The pressure on budgets is also leading to schools operating “selection by stealth”, says Vic Goddard, principal of Passmores academy in Harlow, Essex. His school takes 53% of children with special needs in Harlow – which has five secondary schools – so his budget is disproportionately hit to the tune of about £370,000 a year. He is proud, he says, that parents choose Passmores, but notes pointedly that none of the other local secondaries “are queuing up to give me the £6,000 they’re not spending by not taking their share”.
Goddard says performance on SEN should be a limiting provision in Ofsted inspections, meaning a school could not be graded outstanding if its share of this group of children on roll was not representative of the need in the community.
The Association of School and College Leaders’ deputy general secretary, Malcolm Trobe, agrees some schools are “not acting ethically and are looking at ways of not taking certain young people because of the pressures they believe they will put on the school”. He says the government has not caught up with the cost implications of there being higher numbers of children with significant needs.
A government consultation specifically about SEN funding closed in March. The results have yet to be published.
Robert Goodwill, the minister for children and families, says the government’s planned new funding formula for schools, due to start in 2018, will deal with the issue. “We recognise the importance of ensuring that schools have the necessary resources to meet the range of special educational needs. Fairer schools funding – backed by £1.3bn of additional investment – will mean protection for those with high needs and will ensure every local authority is in a position to give schools a cash increase through the new formula.”
Meanwhile, though, Goddard says: “As a society we are letting down the parents, and if I’m honest it feels like we’re blaming and punishing them for having a child with special needs.”
In her past two pregnancies, the Duchess of Cambridge suffered from extreme morning sickness, known as hyperemesis gravidarum (HG).
It appears that she is having a tough time with it again, now she is expecting her third child.
HG is a condition thought to affect around one in every 100 women in pregnancy and is much more severe than “normal” morning sickness.
Some mums-to-be who have it report being sick up to 50 times a day.
Unlike regular morning sickness, HG may not get better after the first few months of pregnancy.
Why do only some women get it?
The cause is thought to be pregnancy hormones but it is unclear why some women suffer worse than others and why it can persist. If you are suffering from it, there is nothing that you are doing or have done that has brought on the symptoms. It is not your fault that you have it.
HG is more likely if you have had it before or if you are expecting twins or triplets. HG does appear to run in some families.
How bad is it?
A woman with HG can experience:
Persistent vomiting
Dehydration
Tiredness
Dizziness
It can be very unpleasant and have a huge impact on daily life.
Women who have experienced HG say it made them feel isolated, lonely, scared and frustrated.
Can it harm the baby?
There is no evidence that it is directly harmful. It is not a sign that the pregnancy is unhealthy.
Doctors will want to make sure that the mother is not losing too much weight during the pregnancy or getting dehydrated because this can be harmful.
What helps?
Seek help from your doctor and midwifery team. Doctors can prescribe drugs to help control the nausea.
Some women say keeping a diary of their symptoms helps them become more aware of what times of day they might feel well enough to eat and drink.
Keeping well hydrated by drinking enough fluid is vital. Water is great and small, frequent sips might be more manageable.
Some pregnant women say certain smells, including cooked food, make them feel even more nauseous. If that is the case, try to avoid them if you can.
Meals that are high in carbohydrate and low in fat, such as potato, rice and pasta, are sometimes easier to tolerate. Try plain biscuits or crackers. Some women find eating or drinking ginger products helps.
The charity Pregnancy Sickness Support has a support forum where people can share their experiences.
Some women find it helpful to carry a “sick kit” – a pack of wipes, some disposable bags, a bottle of water and some mints or chewing gum.
Have regular check-ups and stay in touch with your doctor. HG can be extremely serious. If you are unable to drink fluids you can become dangerously dehydrated. You may need to be admitted to hospital to receive fluids intravenously via a drip.
The Unspoken Project CIC is embarking on its most ambitious project yet. A presentation on how to talk with an AAC peep (or just another human being) at the ISAAC (International Society for Augmentative and Alternative Communication) conference.
In 2018, the conference is being held on the Gold Coast of Australia and we really want to get there. In order to do this we need to raise as much money as possible and get as many people as we can on board.
We think AAC users should be heard and it is our aim to create better representation of AAC, break down stereotypes and improve communication access worldwide.
Our dream is that everyone who uses AAC and has communication difficulties are spoken to as human beings with respect.
We are hoping to make a tongue in cheek video entitled “How not to talk with an AAC user”. We feel adding humour to a serious subject is powerful (I think).
If you would like to join us on this adventure, there are a few ways you can do this.
On 21st September we are holding a quiz night at the John Baird in Muswell Hill. The tickets are £5 and include a Ploughman’s Lunch. To book a table, call The John Baird on 020 8444 8830.
We are also planning other events like this throughout the year and will keep you posted on the details as and when they come.
Another way you can help is by giving us your views by filling in our questionnaire about voice. This can be done by following the link: https://www.surveymonkey.co.uk/r/7THLKJ3
The video we plan to make will require a lot of man/woman power and this is another way you can help. If you would be interested in being involved with this, please contact us at kate.unspoken@gmail.com
Meet the poet whose poem about OCD has 62 million YouTube hits, on the September talk show from BBC Ouch.
Also, writer Rachel Bagshaw reveals how she feels pain but also sees and hears it. And Tourette’s Hero Jess Thom speaks strongly about how she deserves to be an independent disabled person.
Presented by Simon Minty and Kate Monaghan from the recent Edinburgh Festival.
A mother killed herself after her disabled son lost a string of benefits and support, a coroner said.
Valerie Grant, 73, walked in front of a train near Stafford on 23 April.
Her severely autistic son James, 37, had lost his job placement and been told he no longer qualified for disability benefits shortly before his mother died.
Coroner Andrew Haigh said he did not know who to complain to because she was let down by so many agencies.
In the months before Mrs Grant’s death, several agencies withdrew support from James.
‘What do I have to do?’
He had lost a placement as a bin man, no longer qualified for a day care centre and had been turned down for accommodation, the inquest heard.
He had also just been notified that he would lose disability living allowance in May and did not qualify for PIP – personal independence payments.
Mrs Grant, who had a history of depression, had previously said when interviewed by mental health workers: “What have I got to do? Top myself to get help for my son?”
On 10 January, she confided in her GP that she had suicidal thoughts and when tested, scored 96% for the severity of her mental health state. She was given a routine appointment which she never attended.
The inquest in Cannock concluded she had taken her own life whilst suffering from depression.
‘One blames another’
Mr Haigh accepted that lack of support was probably the main issue.
“There were a number of agencies involved, but nobody took a lead.
“I do have concerns about the lack of support, but I don’t think there’s any one agency that I can write to to try to remedy this,” he said.
Mrs Grant’s stepson, Stuart Grant, shouted at the hearing: “It is just being swept under the carpet.
“One agency blames another agency and they can get away with it.”
Mr Haigh said that if family members wanted to write to him, he would give the matter further consideration.
A press release from Inclusion London. Same Difference was hoping for a different result for Luke Davey. We wish him well.
Today, on the 1st of September 2017, the Court of Appeal delivered its judgement in the case of R (on the application of Davey) v Oxfordshire County Council). This is the first case under the Care Act 2014 to reach the Court of Appeal and is critical in determining how far the legislation supports Disabled people’s well-being, choice and control and independent living. The judges dismissed the appeal mainly because of the factual evidence in the case.
The case was brought by Luke Davey, a Disabled person with high support needs, whose support package has been slashed after the closure of the Independent Living Fund (2). The Equality and Human Rights Commission and Inclusion London (3) both intervened in the case, which highlights the situation many Disabled people are going through at the moment with care packages being cut to the bone by cash strapped Local Authorities.
Svetlana Kotova, Disaability Justice Co-Ordinator at Inclusion London said
“We are very disappointed with today’s decision. This judgement illustrates the devastating impact of the Government policies on Disabled people. Many Disabled people like Luke Davey, who were supported by the Independent living Fund had their support packages cut to s bare bone. With those cuts went their independence, choice and control and the opportunity to live a normal life. Today the Court of Appeal confirmed that local authorities can get away with doing this.
Without adequate levels of support more and more Disabled people are existing not living. This is one reason why yesterday the UN Committee on the Rights of Persons with Disabilities said social cuts in the UK have led to human catastrophe.
This case has destroyed any hopes that the Care Act 2014 will transform our experience of social care. It shows how easily local authorities can override disabled people’s about what’s good for us.
It is time the Government recognises and urgently addresses the huge crisis in social care. through ensuring adequate funding and the introduction of an appeals system, which would give Disabled people a fair chance to challenge the views and decisions of social workers”.
To mark 60 years of the Today programme we are looking at how Britain has changed in that time. One of the most noticeable changes is the attitudes to disability and how we treat disabled people.
The Times columnist Melanie Reid, who was paralysed in a horse-riding accident in 2010, and the Radio 4 presenter Peter White, who’s been blind since birth, discuss how they’ve been treated and perceived.
RSS Error: A feed could not be found at `https://tools.prnewswire.com/en-us/live/25821/rss`; the status code is `404` and content-type is `text/html; charset=utf-8`
