McVey flees DWP without answering key questions on WCA deaths ‘cover-up’
Esther McVey has quit as work and pensions secretary without answering questions she was asked by MPs four months ago about whether her department covered up links between its hated fitness for work test and the deaths of benefit claimants.
McVey resigned last week in protest at the prime minister’s Brexit deal, but her resignation came months after two opposition spokespeople wrote to her about claims of a possible cover-up by the Department for Work and Pensions (DWP).
Neither Marsha de Cordova, Labour’s shadow minister for disabled people, nor Stephen Lloyd, the Liberal Democrats’ work and pensions spokesman, had received a response from McVey to their questions by the time she quit the department.
They had written to her after Disability News Service (DNS) reported how DWP was refusing to say if it showed key documents linking the deaths of claimants with the work capability assessment (WCA) to Dr Paul Litchfield, the independent expert the government hired to review the test in 2013 and 2014.
Litchfield carried out the fourth and fifth reviews of the WCA but has refused to say if he was shown two letters written by coroners and a number of secret DWP “peer reviews”.
Litchfield, who was recognised by the prime minister with a CBE in June’s birthday honours, published his two reviews in December 2013 and November 2014, but neither of his reports mentioned the documents, which all link the WCA with the deaths of claimants.
De Cordova wrote to McVey seeking answers about the documents on 25 July, nearly four months ago, and has yet to receive a reply.
Lloyd’s letter to McVey, written a week later, on 2 August, said it would be “astonishing” if Litchfield had not been shown the documents.
His letter added: “In light of Dr Litchfield being awarded a CBE, could you please confirm whether or not he was shown the documents linking the government’s WCA program with the deaths of benefit claimants?”
Weeks later, having failed to receive a reply, Lloyd wrote a follow-up letter.
His office confirmed this week that McVey had failed to reply to either letter.
Even though DWP possessed both the coroners’ letters and all the peer reviews, it has claimed in a freedom of information response that it holds no information in its records to show whether they were passed to Litchfield while he was reviewing the WCA.
A DWP spokeswoman refused to explain why McVey had not answered the letters from de Cordova and Lloyd.
Instead, she repeated a previous comment from the department, stating that Litchfield’s reviews were “independent” and that “DWP provided information alongside other stakeholders – on request”, while “any evidence used was referenced in the review”.
Since DNS revealed the existence of the documents in the years after Litchfield’s final report was published, concerns have grown that DWP and some of its ministers deliberately covered-up evidence showing the fatal impact of the assessment on disabled people.
The coroner’s letters followed the deaths of two men with mental health conditions in 2010 and 2013, and were sent to DWP in the spring of 2010 and early 2014, each warning of further such deaths if changes were not made to the WCA.
Peer reviews – now known as internal process reviews – must be carried out by DWP civil servants into every death “where suicide is associated with DWP activity”, as well as other deaths and serious and complex cases that have been linked to DWP activity.
DWP has admitted that at least seven peer reviews written in 2012 mentioned the WCA, and there are almost certainly more that were written by the time Litchfield wrote his final report in late 2014.
One of the aims of a peer review is to “determine whether local and national standards have been followed or need to be revised/improved”, so DWP would find it hard to explain why they would not have been shown to Litchfield, whose job it was to review how the WCA was working.
But neither of Litchfield’s reviews mentioned either the peer reviews or the coroners’ letters, although the second coroner’s letter was not written until he had begun work on his second review.
Professor Malcolm Harrington, who carried out the first three WCA reviews in 2010, 2011 and 2012, has told DNS he believes he was shown neither the first coroner’s letter (the second letter had not been written by the time he completed his third review) nor any WCA-related peer reviews.
22 November 2018
Ministers’ ‘shocking’ failure to consult DPOs on bill shows UN convention ignorance
The government is facing calls to halt the progress of its mental capacity bill through parliament because of its “shocking” failure to consult any disabled people’s organisations about the controversial legislation, in a clear breach of the UN disability convention.
The Department of Health and Social Care (DHSC) has admitted in a freedom of information response that it failed to consult any organisations led by disabled people while drawing up its mental capacity (amendment) bill.
Instead, it resorted to discussions with big charities like Mencap and Sense, which are run and controlled by non-disabled people, a clear breach of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
It released the list of organisations it consulted in a freedom of information response to the disabled people’s organisation (DPO) Inclusion London.
But DHSC this week admitted that it believed – wrongly – that consulting non-user-led charities like Mencap and Sense on disability-related legislation meant that it was complying with the convention.
Inclusion London said it was “extremely disappointed but unfortunately not surprised” by the department’s “continued apparent inability to understand the difference” between disability charities and DPOs.
And it said it was “outraged” by the failure to consult any DPOs about the bill “despite repeated requests from organisations of people with learning difficulties and self-advocacy groups”, while Inclusion London said the government had also failed to publish any accessible, easy read information about the bill.
Inclusion London called on the government to halt the passage of the “hugely important bill” until it had carried out a “meaningful consultation” with DPOs.
And it called on the government to take its duties under the convention seriously and start engaging directly with DPOs “as required by the UNCRPD”.
Tracey Lazard, chief executive of Inclusion London, said the government appeared to be “deliberately and persistently misunderstanding the very real difference” between DPOs and those charities “that are run and controlled by non-disabled people that do not represent us or reflect our lived experience”.
She said the evidence pointed to the government “deliberately choosing not to consult or engage” with DPOs, and she added: “This is quite simply unacceptable and goes against everything the UNCRPD stands for.”
She said: “In any other circumstances there would be an outcry if a bill that focuses on a specific community then excludes that community from having any information, knowledge or say over that bill.”
But she said this now appeared to be “standard government practice” where disabled people were concerned.
Last week, DNS reported how more than 100,000 people had signed a petition – drawn up by a network of DPOs, including Inclusion London – demanding the government make major changes to the bill because of fears that it would make it easier for many disabled people to be deprived of their freedom.
There are particular concerns about the powers that the bill – which will affect an estimated 300,000 people in England and Wales with impairments including dementia, learning difficulties and brain injuries – will grant care home managers, local authorities and NHS organisations.
Some amendments to the bill have been made in the last few days, but they have not satisfied the concerns of disabled campaigners. The bill began its report stage in the Lords yesterday (Wednesday).
The timing of DHSC’s admission is particularly embarrassing for the government, coming just days after a UN rapporteur delivered a stinging report on its efforts to address the extreme poverty experienced by disabled people and other disadvantaged groups.
It is also little more than a year after the chair of a UN committee said the government’s cuts to social security and other support for disabled people had caused “a human catastrophe”.
In the freedom of information response, DHSC listed 28 organisations that it consulted with about the bill between March 2017 and July 2018, including the General Medical Council, the Law Society, the National Autistic Society, Mencap, Sense, Rethink, the Care Providers Alliance, Age UK, the British Association of Social Workers and BUPA.
It also said it consulted with representatives of local government, the social care sector and the NHS.
But not one of the 28 organisations is led and controlled by disabled people.
The UNCRPD makes it clear that, when developing laws and policies relating to disabled people, governments “must closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations”.
It defines “representative organizations” as those that are “led, directed and governed by persons with disabilities”, a definition which the committee on the rights of persons with disabilities included in its “general comment number seven”, which was adopted in September.
When Disability News Service (DNS) asked DHSC why it failed to consult any DPOs about the new legislation, and whether it accepted that this was a breach of the UN convention, a spokeswoman said there was no such breach “as we have consulted (and continue to consult) with ‘representative organisations’, as required”.
She added: “The [UNCRPD] requires government to consult with ‘representative organisations’.
“We have complied with this by consulting throughout the process with third sector organisations, such as Mencap and Sense, who represent disabled people and whose members have fed back their views.
“We have also engaged directly with individuals with dementia and learning disabilities, and their carers, to ensure the bill delivers effective reform whilst strengthening safeguards.”
When DNS pointed to the convention and general comment number seven, another DHSC spokeswoman declined to change the comment, and said: “We consider that we have complied with the convention by consulting throughout the process with third sector organisations, such as Mencap and Sense, who represent disabled people and whose members have fed back their views.”
DHSC also says the bill is based on proposals from the Law Commission, which itself carried out four years of engagement with service-users, local government and service-providers.
22 November 2018
UN poverty report: Newton refuses to apologise for misleading MPs about report
The minister for disabled people is refusing to apologise to MPs for misleading them about a report by a UN human rights expert on the UK’s record on causing and addressing extreme poverty.
Professor Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, finished a 12-day fact-finding visit to the UK last week, concluding that the government’s policies and “drastic cuts to social support” were “entrenching” high levels of poverty and inflicting unnecessary misery.
He was highly critical of the benefits system, and highlighted claimants’ concerns about the system of “mandatory reconsiderations” (MR), in which DWP civil servants review decisions on eligibility for benefits such as personal independence payment and employment and support allowance.
Claimants must go through an MR before they can appeal to an independent tribunal.
But Alston concluded, in the preliminary report he published on Friday: “When claimants contest assessments that they consider to be wrong, there is a clear sense that the Orwellian named anonymous ‘decision-maker’ rarely varies the approach.
“Similarly the requirement that before appealing a disability assessment to a tribunal a phase of mandatory reconsideration must take place is considered by many observers to be little more than a delaying tactic.”
But when asked by Labour’s shadow minister for disabled people, Marsha de Cordova, whether she would commission an independent review of how benefit sanctions and conditionality affect disabled people – after Alston had described the sanctions regime as “debilitating”, “draconian”, “harsh” and “arbitrary” – Newton instead claimed that there had been “factual errors” in the UN rapporteur’s report.
She said: “For example, on mandatory reconsiderations, he absolutely denied the fact that decisions were overturned, yet 19 per cent of mandatory reconsiderations found in favour of disabled people.”
She also told MPs that the benefit system was “there to provide personalised and tailored support for its recipients”, and she added: “We have undertaken a huge number of independent reviews of our benefit system and we do not hesitate in making improvements when they are identified.”
A DWP spokeswoman refused to say if Newton would apologise for misrepresenting what Alston had said in his report.
She also refused to say if Newton would point to the other “factual errors” she referred to in the House of Commons.
But she said, in a general statement about the report: “We completely disagree with this analysis.
“With this government’s changes, household incomes have never been higher, income inequality has fallen, the number of children living in workless households is at a record low and there are now one million fewer people living in absolute poverty compared with 2010.”
She added: “We are absolutely committed to helping people improve their lives while providing the right support for those who need it.”
It is the fourth time in less than a year that Newton has been accused of misleading MPs.
In July, she denied misleading the Commons work and pensions committee about the early years of the government’s much-criticised disability employment scheme Disability Confident.
In June, as she tried to defend her government’s repeated breaches of the UN disability convention, she misled MPs in the House of Commons by stating that there had been “no freeze in the benefits that disabled people receive”, even though every part of employment and support allowance – apart from the support group top-up – is caught in the freeze on working-age benefits that is set to last until 2020.
And in January, Newton had refused to apologise for misleading MPs about a court of appeal judgment that was highly critical of her new boss, Esther McVey, just a day after her appointment as the new work and pensions secretary.
22 November 2018
UN poverty report: UK government has ‘inflicted great misery’ on disabled people
The UK government has inflicted “great misery” on disabled people and other marginalised groups, with ministers in a state of “denial” about the impact of their policies, a UN human rights expert has concluded.
Professor Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, said disabled people had faced “endless problems” as a result of the government’s social security reforms.
And he said it was clear that there needed to be a better assessment of the impact of the government’s social security cuts and reforms, including any links to the deaths of people found unfairly fit for work.
He said work capability assessments that had found disabled people unfairly “fit for work” had caused “a huge cause of frustration and disbelief” and that he had no doubt that disabled people had been “hit particularly hard by the changes in the benefit system”.
Alston said figures from the Social Metrics Commission showed that 14 million people, a fifth of the population, were living in poverty and nearly half of them were from families in which someone was disabled.
He said disabled people “were feeling a very big crunch” and he added: “Many of them were still getting benefits but those benefits had been reduced dramatically, many others were put in a position where the assessment had concluded that they were not really disabled and that they should simply get out and work.”
He said disabled people had told him “again and again about benefits assessments that were superficial and dismissive, and that led to findings that contradicted the advice of their doctor”.
Alston said the “lack of compassion” and the “lack of trying to really understand the challenges confronted in life” by many disabled people was “a real problem”.
He was speaking to journalists at the end of a 12-day visit to the UK as he published a preliminary statement on his findings.
He said the government had succeeded in putting out the message that “the state does not have your back any longer. You are on your own.”
And he warned: “By emphasizing work as a panacea for poverty against all evidence and dismantling the community support, benefits, and public services on which so many rely, the government has created a highly combustible situation that will have dire consequences.”
Alston said his discussions with ministers had convinced him that they were in “a state of denial” about poverty.
He said they appeared to be “happy with the way their policies are playing out” even though they had inflicted “great misery” on groups such as “the working poor, on single mothers struggling against mighty odds, on people with disabilities who are already marginalized, and on millions of children who are being locked into a cycle of poverty from which most will have great difficulty escaping”.
He said he had heard “story after story from people who considered and even attempted suicide” and had spoken with many organisations that had needed to introduce suicide prevention training for frontline staff.
One adviser told him: “The cumulative impact of successive cuts has been devastating.
“People are coming to me because they are suicidal, they have turned to sex work, they can’t live with themselves.”
Alston said there was a sense from the government that it should “make the system as unwelcoming as possible, that people who need benefits should be reminded constantly that they are lucky to get anything, that nothing will be made easy”.
And he said it was “very hard to disagree” with the conclusion that the government’s sanctions system was “cruel and inhuman”.
He said the government clearly wanted sanctions to be “harsh… immediate… painful”, even though the evidence he had seen suggested that they were “usually counter-productive, that they create fear and loathing among claimants, that they impose immense hardships on people who might have been five minutes late for an appointment [or] might have screwed up in some other way”.
Alston said this “punitive approach” was “utterly inconsistent” with the “social underpinnings” of both people’s human rights and the “British sense of community and the values of justice and fairness”.
Although his report focused on the social security system, particularly universal credit, he also pointed to the real-terms cuts of 49 per cent in government funding faced by local authorities from 2010-11 to 2017-18, alongside a rise in demand for social services.
He said: “As I toured the country, I was told time and again about important public services being pared down, the loss of institutions that would have previously protected vulnerable people, social care services that are at a breaking point, and local government and devolved administrations stretched far too thin.”
Asked in parliament on Monday about the report’s findings on disability, the minister for disabled people, Sarah Newton, said the government was “putting in place record levels of funding to support people with disabilities”.
She said: “I published a very full response to the previous UN report [by the UN’s committee on the rights of persons with disabilities], and I utterly repudiate the conclusion that this country does not support disabled people.
“I am determined to make sure that every disabled person in our country has the opportunity to fulfil their potential.”
Asked by Marsha de Cordova, Labour’s shadow minister for disabled people, about the sanctions regime and the “hostile environment” the government had created for disabled people, Newton claimed wrongly that Alston had stated that no benefit decisions at all were overturned at the internal review, or mandatory reconsideration, stage (see separate story).
Newton said: “The benefit system is there to provide personalised and tailored support for its recipients.
“We have undertaken a huge number of independent reviews of our benefit system and we do not hesitate in making improvements when they are identified.”
Alston will present a full report to the UN Human Rights Council in June.
22 November 2018
UN poverty report: Universal credit could ‘wreak havoc’, says human rights expert
The government’s new universal credit benefit system could “wreak havoc” and has created a “digital barrier” that prevents many disabled people and other disadvantaged groups from accessing the support they are entitled to, according to a UN human rights expert.
Professor Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, said the government’s “test and learn” approach to universal credit risked treating such groups “like guinea pigs” and could “wreak havoc in real people’s lives”.
And he said that the preparations being made by local authorities and charities for the rollout of universal credit had “resembled the sort of activity one might expect for an impending natural disaster or health epidemic”.
He said: “They have expended significant expense and energy to protect people from what is supposed to be a support system.”
Alston was speaking to journalists at the end of a 12-day visit to the UK, as he published a preliminary statement on his findings. He will present a full report to the UN Human Rights Council in June.
Earlier this month, Disability News Service reported how written evidence submitted to Alston’s inquiry described how a man with learning difficulties had died a month after attempting to take his own life, following a move onto universal credit that left him hundreds of pounds in debt.
Alston said in his report that a key feature of universal credit was the imposition of “draconian sanctions”, even for minor infringements.
He said: “Endless anecdotal evidence was presented to the special rapporteur to illustrate the harsh and arbitrary nature of some of the sanctions, as well as the devastating effects that resulted from being completely shut out of the benefits system for weeks or months at a time.”
Alston also warned of the impact of the government’s decision to make universal credit the first major government service that is “digital by default”, with the expectation that claimants will rely on an online service rather than human interaction with DWP staff.
He said: “We are witnessing the gradual disappearance of the postwar British welfare state behind a webpage and an algorithm.
“In its place, a digital welfare state is emerging. The impact on the human rights of the most vulnerable in the UK will be immense.”
Asked about Alston’s concerns about universal credit, the new work and pensions secretary, Amber Rudd, told MPs on Monday that she had been “disappointed, to say the least, by the extraordinary political nature of his language” in the report.
She said: “We on the Conservative benches will always engage with professionals, experts and non-governmental organisations – we are not so proud that we do not think we can learn as we try to adjust universal credit for the benefit of everybody – but that sort of language was wholly inappropriate and actually discredited a lot of what he was saying.
“We look forward to working with experts in the area to make sure that we get the right outcome for the people whom we want to look after.”
She later described her new department as “a force for good”, but she admitted that there were “problems with universal credit, despite its good intentions”.
She said: “I have seen them for myself. I will be listening and learning from the expert groups in this area who do such good work. I know it can be better.
“I will make it my role to ensure that we deliver that through our discussions within the DWP and through discussions with the Treasury.
“We will have a fair, compassionate and efficient benefits system.”
In response to Rudd’s comments, Alston said on Twitter that the government had “a set of talking points about poverty and employment” that fail to address poverty, use “carefully chosen and misleading statistics to paint a rosy picture” and “ignore the horrible situation in which a large number of Britons live.
He added: “That’s not the way to find solutions.”
He also told Disability News Service: “I am hoping the secretary of state’s criticism of my report is not a substitute for a more systematic policy response to the many issues I have raised.
“My report recounts in some depth the many problems experienced by adversely impacted groups, and especially by people with disabilities, and I would hope that DWP will seek to improve the system so that it does not cause such hardship and make already very difficult situations even worse.”
22 November 2018
Union leads call for action on ‘silent massacre’ of disabled staff and students
Disabled teachers, lecturers and students have come together to call for sweeping changes to disability equality laws, and to highlight the barriers they face across the education sector.
A parliamentary meeting heard last night (Wednesday) how disabled people working in the education sector have been confronted by employers that are failing to provide them with accessible lecture and teaching spaces, denying them the right to disability leave – for disability-related absence from work – and delaying the provision of the reasonable adjustments they need and are entitled to under the Equality Act.
The event, hosted by Labour’s shadow minister for disabled people, Marsha de Cordova, was part of the University and College Union’s (UCU) first national day of action for disability equality in education.
Joanna Vanderhoof, co-chair of UNISON’s eastern region disabled members’ committee, described how she had been forced to go through an internal grievance procedure to secure the reasonable adjustments she needed from her university employer.
She said she had been “fundamentally failed” by her employer and as a result set up a disabled staff network and implemented workplace training on disability equality.
She said: “My employer broke current legislation in multiple areas yet I’m the one who has suffered and they face no repercussions whatsoever.”
She said she felt “utterly trapped because I can’t move to another job easily the way others can because I am disabled”.
Vanderhoof said that current legislation was “simply not sufficient”.
Disabled physics teacher Saeeda Bugtti said she had gone from being a highly-praised “poster girl” for her school to being asked if she wanted to take early retirement, after she became disabled.
She said: “As soon as I became disabled, I was too much of a problem.”
She echoed other speakers who had described how long it took for reasonable adjustments to be agreed and implemented by employers.
Another disabled member of staff said it had taken his “affluent” university – which had a surplus of £200 million – one-and-a-half years to provide him with a telephone with an amplifier.
He said the current legislation was “toothless” and there was a need to campaign for “a more effective Equality Act”.
Elane Heffernan, chair of UCU’s disabled members’ standing committee, who chaired the meeting, said: “We have to win this change. We cannot have this silent massacre of workers in education and students who cannot even get in through the door in the first place in terms of education.”
The meeting also heard how further education colleges and universities, motivated by increasing pressure to cut costs and increase revenue, were refusing to support disabled students and even attempting to force then out because it was too expensive to provide them with the support they needed.
Rachel O’Brien, disabled students’ officer for the NUS, said there was an increasing “marketisation” of further and higher education, as well as cuts to disabled students’ allowance in higher education and the introduction of education, health and care plans in further education, which had also led to cuts in support.
She said the introduction of “fitness to study” policies – assessing whether someone can continue as a student by looking at aspects of their life on campus such as health, behavior and attendance – implicitly or even explicitly targeted disabled students, such as those with mental health conditions, and could see them kicked off their courses.
She said: “It is no coincidence that this has come in at the same time as marketisation.
“Disabled students, to be frank, are expensive. Universities and colleges are being forced to be businesses.
“They have incentives to get rid of us, and they are trying to do it as fast as they possibly can.”
Among UCU’s demands are for legal rights to disability leave, a review of building regulations to ensure facilities are fully accessible, and strict time limits for reasonable adjustments to be provided for disabled staff.
Campaigners who have supported the UCU campaign – including other unions such as the National Education Union and Unison – also want a legal right for disabled people to access mainstream education and a reversal of cuts to special educational needs and disability (SEND) spending.
Michelle Daley, an inclusive education campaigner, said that disabled people should not be asking for “reasonable adjustments” but should be seeking “adjustments as a right” if that was what they needed to be able to function.
Simone Aspis, policy and campaigns coordinator for The Alliance for Inclusive Education, said: “Education funding has an impact on our right to access mainstream education.
“We are increasingly seeing attacks on provision of support and local authority support and disabled students’ allowance support in mainstream education.”
She said there was “more and more money being ploughed into segregated provision”, which amounted to an “ideological attack” on disabled people’s right to inclusive education.
Paula Peters, a member of the national steering group of Disabled People Against Cuts (DPAC), said: “It is so important that disabled people have role models but disabled staff within education settings are… under attack from workplace discrimination and worsening conditions at work, with experiences of hostile environments and isolation at work all far too commonplace. This is unacceptable.”
The idea for the day of action originally came from the union-funded National Disabled People’s Summit, which was held at the headquarters of the National Education Union in central London last November and was co-organised by the Reclaiming Our Futures Alliance.
The House of Commons event also coincided with the start of Disability History Month (see separate story).
Richard Rieser, founder of Disability History Month, told the day of action event that there was a need to “learn from the history” when it came to the increasing segregation of disabled children and young people, and he added: “We have the right to be treated with equality and challenge all the historic assumptions that have been made about us for many hundreds of years.”
The day saw UCU branches across the country organise activities to raise awareness about the issues faced by disabled staff and students, with support tweeted through the hashtag #IncludeUs.
One of those actions took place at the University of Liverpool, and involved disabled lecturer Dr Kay Inckle, who told Disability News Service in August how she had been forced to scour the campus for accessible rooms in which she could deliver her lectures.
She was even told that it might be considered “reasonable” for her to go down stairs on her bottom in some circumstances rather than be timetabled into ground floor or fully accessible rooms.
22 November 2018
ALLFIE calls for halt to MPs’ ‘sham’ SEN inquiry
A disabled campaigner has called for a “sham” inquiry by MPs into the special educational needs and disability (SEND) system to be halted until it agrees to address the increased levels of segregation of disabled students and cuts to their support.
She told an event held in parliament last night (Wednesday) to mark the University and College Union’s (UCU) first national day of action for disability equality in education that the committee was refusing to “discuss the increased levels of segregation, refusing to discuss what needs to happen for this country to be more inclusive, is refusing to discuss cuts to SEND support services”.
She added: “I would urge everybody in this room to write to their MPs to demand an end to that inquiry until they have decent terms of reference that recognise the attack on inclusive education in this country.”
Flood told Disability News Service this morning that she had been feeling “more and more angry” about the way her evidence had been handled by the committee’s chair, disabled Tory MP Robert Halfon.
She said: “I felt I was the only one who was ignored when I attempted to speak.
“I was stopped from talking when I started talking about the need for a rights-based education system.
“In hindsight, I shouldn’t have been that polite.”
She is to write to the committee to express her concerns and will also contact the committee’s Labour MPs to ask why they had not made a stronger case for the committee’s “incredibly weak” terms of reference to be expanded.
Halfon was not available to comment this morning.
Flood told the committee on Tuesday that there had been a “spike” in the number of parents contacting ALLFIE for help since the government’s Children and Families Act became law in 2014.
She was one of a number of SEND experts giving evidence to the committee as part of its inquiry into the impact of the major reforms to the SEND system introduced through the act.
She said: “I would say the majority [of parents who contact ALLFIE] are at the end of their tether.
“They come to us and then recount the most appalling experience of struggle, of fight, of battle, feeling embattled, and a lot of this revolves around the myth of parental choice.”
She told the committee that there was no choice in the current system, and that parents had to accept the decisions of their local council, school or other education provider.
She said: “The minute that a parent says, ‘we want something different,’ particularly if it is, ‘we want our young person in mainstream with all the right support,’ parents are then often finding themselves isolated, labelled as a difficult parent, an unreasonable parent often, and are then left to fight.”
Flood said that this often leads to “a hugely expensive and very adversarial battle” with the local authority.
She added: “There is a perfect storm in terms of schools struggling with league tables, struggling with funding, parents struggling to get the right support for themselves and for their young person and yet still expected to talk about having choice and having a new aspiration for their children.”
Flood said the “real issue” was that the SEND system was “needs-led” rather than “rights-led”.
She said: “Parents will often have to get into this awful competitive round of who has the most significant need.”
The committee also heard from Steve Haines, executive director for policy and campaigns for the National Deaf Children’s Society, who pointed to a survey by the charity of about 1,000 parents of D/deaf children and young people.
He said that only about four per cent felt they had seen an improvement in support since the act was introduced while 82 per cent were concerned about funding.
One of the areas the committee’s inquiry is examining is the act’s replacement of statements of special educational needs with new education, health and care plans (EHCPs), which last from birth to the age of 25 and set out all the support a family in England should receive.
Dame Christine Lenehan, director of the Council for Disabled Children, which is a “strategic reform partner” with the Department for Education on its SEND reforms, said a “fundamental criticism” of the act was that it had “concentrated almost wholly in its first three years on the 2.8 per cent of children who have EHCPs.
“Our worry is that the other 12 per cent of children who actually need SEN support are not yet getting that support in the way that they should.
“It’s not clearly defined enough in schools, it’s not nearly understood enough in schools. We are clear that that remains an area of significant challenges.”
She also said there was an “inbuilt unfairness in the system” because it was usually people who were “white and middle class and educated” who were able to fight the system and take their battle for support for their child to a tribunal.
Guardian journalist John Harris, whose son is autistic, told the committee that the new system was “failing” despite its good intentions, partly because it was “enacted at a time of austerity, which continues”.
He said parents often find an “almost impossible wall of paperwork” when they seek support for their disabled child, followed by an “almost straight kneejerk refusal” by the local authority.
He said that, “irrespective of the good intentions” in the act, its execution had left “a huge amount to be desired, and I would say we are faced with a system in crisis”.
22 November 2018
Campaigner’s six-year battle to secure the truth about universal credit
A freedom of information campaigner has vowed to continue his six-year battle to uncover the grim truth about universal credit and its impact on disabled people and other groups fighting poverty.
John Slater has been using freedom of information laws since 2012 in an attempt to force the Department for Work and Pensions (DWP) to reveal the serious flaws at the heart of its new benefits system.
Slater, who has an extensive background in software development and programme management in industry, has submitted scores of requests under the Freedom of Information Act in the last six-and-a-half years.
But his attempts to secure information that he believes should be publicly available have been repeatedly obstructed by DWP’s frequent breaches of freedom of information laws.
He first became intrigued in universal credit in early 2012 after claims from work and pensions secretary Iain Duncan Smith that DWP was going to complete the move to universal credit within just five years, a claim he knew was a “ludicrously short timescale for such a complex programme”.
But he was also alarmed to hear about DWP’s plans to adopt an “agile” approach to developing the programme, something that had never been attempted on such a large and complex programme.
Agile is a technique used mostly for small IT projects and which relies on flexibility, responding rapidly to change and making frequent and continual improvements.
None of these, Slater knew, were descriptions usually associated with DWP, or the ministers in charge of the programme, including Iain Duncan Smith.
He therefore began asking DWP questions about Agile, the risks the department associated with the programme and the “milestones” it had set to measure the progress of universal credit, through freedom of information (FoI) requests.
But right from the start, the department placed every obstacle it could in his way.
In May 2012, Slater told DWP that it had breached its legal duty to respond to freedom of information requests within 20 working days.
Although the department responded to his complaint later the same day, it then relied on an exemption under the act, claiming that releasing the information would “prejudice the free and frank provision of advice” or the “effective conduct of public affairs”.
Slater did not finally secure all the information he was seeking until April 2016, nearly four years later, following a series of tribunal hearings and appeals. The information he received, he says, “did not show a well-run programme”.
He says he has continued to ask questions about the programme for more than six years because he is “stubborn”.
“As long as the DWP tries to hide what is really going on within UC, I will keep asking reasonable questions and asking for information that should shine a light on what’s actually happening.”
He adds: “I suspect that if the DWP hadn’t fought so hard to prevent me getting the risks, issues and milestones and been so dishonest I may well have stopped after that initial FoI request.”
Since that first FoI, most of his requests have initially been refused by DWP, resulting in repeated complaints to the Information Commissioner’s Office (ICO).
He has so far been successful in every single appeal he has made to the information rights first-tier tribunal, and in responding when DWP has appealed to the tribunal, including cases when DWP has withdrawn its appeal before the hearing.
He also complained to the ICO about DWP’s plans to share the sensitive data of claimants of universal credit with other organisations, which he believed breached the Data Protection Act, and which led to ICO raising “significant concerns” and his own subsequent FoI request which he used to ask DWP what measures it had taken to protect claimants’ sensitive personal data.
One of his FoI requests asked if DWP had a schedule or plan to show how the rollout of universal credit would be completed by 2021, as it claimed at the time.
He said: “Unsurprisingly, no such plan existed. This meant, in my opinion, that the date was a guess.”
One of his latest bids for transparency was launched in April 2017, seeking the information that was provided for regular meetings of the programme board that reviews progress on implementing the universal credit system and whose members are mostly senior DWP civil servants.
Like many other requests, its progress has been hindered by refusals, delays, appeals, complaints to the information commissioner, further delays, criticism of the department by the commissioner, and yet more of what he told DWP were “outrageous delaying tactics” and “contempt for the law”.
He said: “Given how hard it is to get accurate information about universal credit out of the DWP I asked for the packs of information that the UC programme board get given for their monthly meetings.
“I assumed that this was likely to show an accurate view of what was really going on with UC.”
Last week, Disability News Service revealed how he had forced DWP to deposit significant numbers of previously confidential documents about universal credit in the House of Commons library as a result of this request.
Among those documents, Slater found evidence that appears to show that DWP is planning to transfer more benefits – including the contributory version of employment and support allowance – onto the creaking universal credit IT system.
He believes this would place greater stress on the system and expose even more disabled people to the stress and anxiety of having to cope with an online system that is already inaccessible to many of them.
He is currently waiting for the ICO to rule on whether DWP should release unredacted versions of the documents deposited in the Commons library, which he believes would reveal even more embarrassing information about the impact of universal credit on the people forced to rely on it.
Slater – who has worked closely on his campaigning with Disabled People Against Cuts – believes that universal credit was a “total mess” in its early years, before DWP brought in outside experts to assess what was going wrong.
This led to a major “reset” of the programme in 2013, following severe criticism by the government’s own Major Projects Authority.
Although Slater suspects it has now improved to some extent, he believes the disaster of the early years of its development means it is never likely to regain that lost ground.
He says: “Once something on this scale has gone so horribly wrong, I don’t think you can ever fully recover it and get it to the place it would have been if it had been run properly from the start. I’ve seen this with other programmes and projects.”
And he believes the senior civil servants leading on universal credit “are only just waking up to what it means to deliver change on this scale”.
But he also believes that DWP has failed to think about the impact of such major reform on the claimants themselves, including sick and disabled people, and “fails to reflect or take account of people’s real lives”.
“I don’t think they give a damn about the claimants. I think they are almost seen as a nuisance,” he says.
The warnings and concerns of disabled activists, politicians and other professionals suggest he is right.
Campaigners have repeatedly warned that universal credit is “rotten to the core”, with “soaring” rates of sanctions and foodbank use in areas where it has been introduced, while, in June, a report by the National Audit Office said DWP was failing to support “vulnerable” claimants and was unable to monitor how they were being treated under universal credit.
Secret DWP reviews have already been carried out into the deaths of at least four universal credit claimants that have been “linked to DWP activity”.
Disability News Service also reported earlier this month how a man with learning difficulties died a month after attempting to take his own life, following a move onto the “chaotic” universal credit system that left him hundreds of pounds in debt. It is not clear whether this was one of the four deaths reviewed by DWP.
And only last week, the UN’s special rapporteur on extreme poverty and human rights, Professor Philip Alston, said universal credit had “built a digital barrier that effectively obstructs many individuals’ access to their entitlements”.
Slater agrees with this and warns of the “unexpected and unintended consequences” of the rush to rely on an online system, particularly as the numbers moving on to universal credit continue to increase and DWP continues to introduce major alterations to the software that powers the system.
He also agrees with Alston’s conclusion that the government’s “test and learn” approach “could treat vulnerable people like guinea pigs and wreak havoc in real people’s lives”.
Slater says: “The drive to reduce costs and automate parts of the UC process, especially sanctions, will cause major problems unless the DWP spends the time to think about and talk to people who are using the system.
“I think as the UC system becomes more complex and things are automated, we will see more and more unexpected and unintended consequences.
“For example, in the recent Panorama program a man was sanctioned because his work coach was away and a meeting couldn’t take place.
“If the DWP is going to automate more of the process, this is only going to get worse for people.”
He fears that universal credit will never work properly because DWP refuses to listen to claimants, particularly those with the highest support needs and the most complex barriers to using the system.
In the meantime, he intends to continue probing the flaws of universal credit with his freedom of information requests.
He says: “As long as the DWP keeps trying to present universal credit in an unrealistically positive light, I will keep trying to get information that shows what is actually going on.
“This is why we have the Freedom of Information Act.
“I don’t like organisations that are dishonest and use their size and power to bully people and impose their will or get away with mistakes that should be made public.”
22 November 2018
Activist tells mental health conference delegates: ‘You’re helping no-one but yourselves’
Grassroots activists have challenged the government and mental health professionals over their failure to address widespread attacks on their rights.
Members of the Mental Health Resistance Network (MHRN) were outside a conference in central London on Tuesday to protest at the “deeply harmful” impact of mental health services on the wellbeing of people living with mental distress.
MHRN said that “profiteers” and “cost cutters” at the event – which was examining “next steps for mental health services” – would be discussing services “designed to benefit employers and neoliberal ideology over the wellbeing of people who live with mental distress”.
They want instead to see a “change in culture” in mental health services and an immediate end to the “conscious cruelty” of the work capability assessment.
Several MHRN activists also attended part of the event, organised by Westminster Health Forum, which is believed to have been attended mostly by mental health professionals and civil servants.
Denise McKenna, co-founder of MHRN, told delegates the conference was “a disgrace” and that they had “no right to make money out of people in mental distress”.
She reminded them that people were taking their own lives because they were having their benefits removed.
She said: “This is about people making money. You’re helping no-one but yourselves.”
She told Disability News Service later that the focus of the part of the event she had attended had been on the government’s agenda of pushing people with mental health conditions into work.
She said: “This abusive ideology is now being embedded into the type of treatment we are receiving.
“You go in to a mental health professional and they actually start bullying you to get a job.
“There was this most toxic piece of Tory ideology being spouted out [at the conference]. I am really not happy with psychiatrists talking about a work cure. That’s quackery.”
Members of MHRN handed over copies of their new document, We Demand… , to delegates, and have sent a copy to Claire Murdoch, NHS England’s national mental health director.
We Demand… makes 50 demands for reform, both of mental health services, and the social security system that service-users rely on.
The document includes calls for a public inquiry into the harm caused by psychiatric drugs and ECT; for the research and manufacture of drugs to be nationalised; for user-led mental health services; and for an inquiry into violence and abuse of patients in psychiatric wards and the community.
Among its demands on social security, it calls for universal credit to be “stopped and scrapped”; for an end to “degrading and stressful” benefit assessments; for the removal of all DWP work coaches from NHS settings; and for an end to “the lie that work can cure mental distress”.
They also want to see a public inquiry into deaths linked to the benefits system, with legal action taken against any MP or peer implicated in these deaths.
And they want to see legal action taken against any health professionals and disability benefits assessors who “cause harm by colluding with the removal of social security”.
An MHRN spokesperson said: “Action to hold the government to account is now long overdue as its reckless and contemptuous treatment of mental health service users and disabled people, removing vital support services and holding the threat of cutting our benefits constantly over our heads, is causing great harm and driving some to suicide.”
MHRN has demanded a full response to its demands from NHS England within two months, and wants an invitation to speak at all such future events.
In an open letter to Murdoch, MHRN demanded “a change in the culture of mental health provision, with the focus on long-term user led support and a stop to the ‘work-outcome or be sanctioned’ approach which is set to drive benefits provision for mental health service users” and amounts to a “dangerous level of pressure and coercion”.
The letter added: “We will also be demanding an end to the lie that mental distress can be cured by the simple act of trying hard enough.
“This is another way of saying, ‘pull yourself together’. It is ill informed, lazy, accusatory, cruel and counter-productive.”
A spokesman for Westminster Health Forum declined to comment on the content of the conference.
22 November 2018
Fresh concerns from user-led network over mental health review
A user-led network has raised new concerns about the approach being taken by those leading a review of a key piece of mental health legislation on behalf of the government, just weeks before they are due to publish their recommendations.
The National Survivor User Network (NSUN) has released a letter it has sent to the chair and vice-chairs of the review of the Mental Health Act 1983, which raises serious concerns about their failure to consider an adequate human rights approach to reform of the act.
The NSUN letter highlights the continuing disquiet of the network and a wide range of other user-led organisations, service-users and allies about the review’s approach, following an earlier letter and a meeting with leaders of the review in July.
Their concerns include the “lack of concrete evidence” that service-users and carers are having an adequate influence on the review, including the failure to hear from enough people who have experienced detention, and an under-representation of service-users and carers in key working groups.
They are also concerned at the “unwillingness” of the chair and vice-chairs to consider recommending the full implementation of the rights contained in the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
A full implementation of the convention would include bringing an end to “detentions, substitute decision-making [appointing someone to make decisions on behalf of a service-user, rather than providing them with support to make the decision themselves] and compulsory treatment”.
The letter from Dr Sarah Carr, NSUN’s acting chair, and Sarah Yiannoullou, its managing director, says they continue to have “serious misgivings” about the review and the recommendations it will make to the government, which are expected next month.
More than 120 organisations and individuals – led by NSUN – first wrote to the review in May to raise alarm about its reluctance to recommend full rights that comply with the UNCRPD.
A further 17 organisations and individuals have since added their names to the concerns being raised.
The first letter included a call on the review to address the concerns raised by the UN’s committee on the rights of persons with disabilities, after it investigated the UK’s implementation of the UN disability convention last year.
The UN committee said in the “concluding observations” to its examination of the UK that the government should “repeal legislation and practices that authorise non-consensual involuntary, compulsory treatment” and the detention of disabled people “on the basis of actual or perceived impairment”.
But Carr and Yiannoullou believe that the review team, led by Professor Sir Simon Wessely, has failed to change its approach since July’s meeting.
They are alarmed that the review’s recommendations are due to be published next month, and could form the basis for the last major reform of mental health legislation for many years.
Carr and Yiannoullou ask the review in their letter to consider a number of recommendations, including services that would be needed if there was to be compliance with the UN convention, such as an “extensive expansion of community-based and community-led resources” and a sharp increase in services that are user-led and appropriate for marginalised communities.
They also want to see widely-available peer advocacy and a “significant rise” in the number of resources that service-users have found particularly therapeutic, such as crisis houses or refuges available to service-users as an alternative to hospital.
In response to the NSUN letter, Wessely said: “Engaging with service users and carers has been a consistent priority for the review as we work towards our final report due out in December.
“One of my vice-chairs, Steve Gilbert, is a mental health service user and has a critical role in influencing and shaping of all our work.
“We have service users and carers within our advisory panel and each of the 18 specialist topic groups we ran over the summer.
“We have a standing service user and carer group, which consists of people with a range of lived experience – both past and present; who we have met with regularly and who have robustly challenged our emerging thinking.”
He said the review team had also held more than 50 focus groups across England and Wales since the start of the year, to hear from people with direct experience of the act, including those currently detained in a variety of settings.
There have been more than 2,000 responses to a survey of people with lived experience, and eight workshops, each involving about 100 attendees.
Wessely also pointed to blogs by Sarah Markham, a member of the service user and carer group, posted in July and August, in which she praised the efforts of the Department of Health and Social Care (DHSC) and the review team to ensure that service-users contribute to the review.
DHSC said the review of the Mental Health Act “will consider the reasons for rising rates of detention under the act, how to reduce the disproportionate number of people from black and minority ethnic groups detained and how to improve processes that are out of step with a modern mental health care system”.
22 November 2018
Parliamentary event recognises disabled musicians who trumped oppression
A parliamentary event has recognised some of the many artists over the centuries whose talent as musicians has “trumped” the oppression they experienced as disabled people.
The event was held to launch the ninth annual Disability History Month, which this year focuses on disability and music and runs from 19 November to 22 December.
Richard Rieser, founder and coordinator of UK Disability History Month (UKDHM), listed many of the countless disabled musicians – many of whose impairments are not widely known – whose “creative impulse, the urge for self-expression, the need to connect to our fellow human beings” have trumped “the oppression we as disabled people face”.
Those he mentioned included Neil Young, Joni Mitchell, Connie Boswell, Itzhak Perlman, Frederick Delius, Beethoven, Hector Berlioz, Mozart, Tchaikovsky, Derek Paravicini, Robert Wyatt, and many blind, black musicians such as blues performers Blind Lemon Jefferson, Blind Willie McTell, and the Reverend Gary Davis, as well as Art Tatum, Ray Charles and Stevie Wonder.
John McDonnell, Labour’s shadow chancellor, who sponsored the event, said Disability History Month allowed people to hear about the “hidden history” of disabled people that is never heard in the mainstream media.
He said: “It’s vitally important that we celebrate it, but at the same time it’s important to recognize the reality of the world as it now is.”
He pointed to the UN committee on the rights of persons with disabilities, which concluded two years ago that the government was guilty of grave and systematic violations of the rights of disabled people in the UK.
He said: “I believe the systematic abuse of human rights is also denying people the opportunity of being able to celebrate their cultures.”
And he said the nature of the curriculum and the pressure on school funding were depriving children of the ability to learn instruments or to take part in dance or drama.
He said it was difficult enough for some of the disabled musicians highlighted during the event to demonstrate their talent but it was now becoming even harder for disabled young people to follow in their footsteps.
He said: “I think we are actually going backwards at the moment. If you see what is happening on the ground, in community after community, in school after school, group after group that have lost their funding… it is an absolute scandal.
“So as well as celebrating the achievement I think we have to be straight with people as well and expose what’s actually happening.
“This is not a party political point, it’s a point about civilized behavior. I think we are going backwards rather than forwards.”
He said there was a need to “get bloody angry”.
McDonnell added: “We should not, in the fifth largest economy in the world, allow disabled people to be treated in this way.
“That anger should motivate us into further action.”
The event included highly-praised live performances from two disabled artists.
Tinuke Jonah performed her first single, Girls Like Me*, which is due to be released tomorrow (Friday), and which she said described how she had realised at the age of 18 that she no longer needed to apologise for her albinism.
The Kellycaster uses an electric guitar as an interface for computer software, allowing him to play both chords and notes.
Kelly said his guitar helped fight oppression, and he added: “We are fighting louder than ever and our voices need to be heard louder than ever.”
He quoted the disabled poet Allan Sutherland, who told him that when he was young, he “didn’t have any footprints to follow” as a disabled person.
“He said that disability art is about our culture, it’s about who we are.
“It gives us that confidence to fight the injustices and oppression we experience.”
The event also watched a video of one of the songs recorded by Lizzie Emeh, who was the first UK artist with a learning difficulty to release an album of original songs, Loud and Proud, in 2009.
She said that her next EP, Meds, which will be released in February, will be about the medication she takes and how it affects her.
She said: “I hate the word ‘normal’. Do you know why I hate it?
“To me, normal is like a cycle on a washing-machine. Do I look like a washing-machine to you?”
The launch event also heard part of an interview between Rieser and Deaf solo percussionist Dame Evelyn Glennie, a longer version of which will be posted on the UKDHM website.
She described how taking off her hearing aids had allowed her to hear the drum she was playing through her body rather than her ears which “really allowed me to concentrate on the whole journey of that sound, the impact of the sound, the resonance of the sound.
“Taking care of how that sound ended was really important because before I was just bang, bang, bang…”
George McKay, professor of media studies at the University of East Anglia, and author of books on protest movements, jazz, and popular music and disability, pointed to the links between punk music and disability, through disabled musicians like Ian Dury and Ian Curtis.
He said the performance of Dury’s rights anthem Spasticus Autisticus at the closing ceremony of the London 2012 Paralympics managed to “articulate an expression of difference and a celebration of difference”.
It was, he said, an “extraordinary punk moment”.
*The single will be available from tomorrow by searching for “Tinuke Jonah Girls Like Me” on all major music platforms, including Spotify, iTunes, Apple Music and Google Play
22 November 2018
News provided by John Pring at www.disabilitynewsservice.com