User-led groups discuss how to turn back the tide of closures

User-led groups met this week to discuss how to turn back the tide of closures of organisations run and controlled by disabled people and service-users.

Research shows the number of user-led groups continuing to fall, due to austerity cuts and other trends affecting their funding.

The closures mean user-led organisations have a “diminishing” voice in opposing oppressive policies, according to a briefing released ahead of the meeting.

The closures are leading to a loss of a collective voice for disabled people, and the knowledge, peer support and advocacy that user-led organisations provide, the briefing said.

The meeting was organised by two national networks of user-led groups, the National Survivor User Network (NSUN) and Shaping Our Lives (SOL).

Professor Peter Beresford, SOL’s co-chair and one of the organisers of the meeting, said: “What was powerful was the strength of feeling at the meeting, which drew together a very diverse range of disabled people and service-users, with very clear messages.

“The allocation of funding must be changed to stop discriminating against user-led organisations and to secure their future; they are crucial as the most direct voice for people increasingly marginalised under our politics.

“Most shocking of all, participants made clear that nobody would fund a black organisation led by white people, a women’s organisation led by men or an LGBTQ organisation led by heterosexuals, yet the king-size portion of money in our field goes to organisations which are the absolute equivalent – dominated by non-disabled people and their agendas.

“It must change and soon, before it’s too late.”

Both NSUN and SOL have produced research showing the number of members falling sharply in the last three years.

Initial findings from NSUN’s latest survey show that user-led organisations are often “overstretched” and forced to rely on the goodwill of volunteers and unpaid staff.

The user-led organisations that took part said securing funding was “increasingly difficult”, with small user-led organisations increasingly losing out on contracts to large, non-user-led charities.

NSUN was also told that austerity, funding cuts and “the nonsense of the benefits system” were having a devastating impact on the lives of individual disabled people.

The briefing paper for this week’s meeting said that the “diminishing voice” of user-led organisations meant there was less opposition locally and nationally to “oppressive policies”.

It said that many user-led organisations were suffering from “severe” cuts to local government funding, which had affected grants from local authorities.

This problem had been “intensified” by the trend of awarding large contracts to national private sector organisations to manage smaller contracts, with user-led organisations often then being asked to deliver the same service for a “much reduced budget”.

Those user-led organisations that do still receive funding from local authorities often feel pressured not to speak out about damaging cuts to services because of their fear of losing contracts.

Grants that are available from trusts and foundations often focus on project funding, leaving user-led organisations struggling to finance their core running costs.

But the briefing paper also warned that the individuals involved in setting up and growing user-led organisations were themselves experiencing “some of the worst deprivation, poverty and life chances in our communities”.

It added: “Their resilience and ability to struggle both personally and on behalf of others is now greatly diminished.”

23 May 2019


Disabled people ‘driven to breaking point’ by cuts, says UN expert

Many disabled people’s families have been “driven to breaking point” by cuts to social care, while other disabled people have been denied benefits and forced by the government into unsuitable work, a UN human rights expert has concluded.

Professor Philip Alston, the UN’s special rapporteur on extreme poverty and human rights, said in his final report on the UK that disabled people were “some of the hardest hit by austerity measures”.

Alston said that cuts to public spending, and “highly regressive” changes to taxes and benefits since 2010 – combined with the government’s “stubborn” refusal to carry out an assessment of the impact of its austerity cuts and reforms on disabled people and other groups – suggested that the UK government’s policies breached the “principle of non-discrimination enshrined in international law”.

The report quotes Equality and Human Rights Commission research that found that some disabled people are set to lose £11,000 on average by 2021–2022, more than 30 per cent of their annual net income.

And it says the UK government’s reforms have often denied benefits to disabled people with high support needs and “pushed them into unsuitable work”, while care for people with mental distress has “deteriorated dramatically”.

The report describes how disabled people told Alston repeatedly when he visited the UK last November about “benefits assessments that were superficial, dismissive, and contradicted the advice of their doctor”.

It adds: “Those with disabilities are also highly vulnerable to cuts in local government services, particularly within social care, which has left them shouldering more of the costs of their care.

“This has driven many families with a person with a disability to breaking point.”

Alston said he had reviewed “seemingly endless evidence” that showed the “harsh and arbitrary nature” of some benefit sanctions, and the “devastating effects of losing access to benefits for weeks or months at a time”.

His report adds: “Many detailed studies give substance to the dire consequences for vulnerable claimants who are sanctioned.”

Disabled people are among the groups disadvantaged by the introduction of universal credit, he said, which has “built a digital barrier that obstructs access to benefits”.

He said he had heard “countless stories of severe hardships suffered under UC”, reports that were “corroborated by an increasing body of research that suggests UC is being implemented in ways that negatively impact claimants’ mental health, finances and work prospects”.

The report points out that work and pensions secretary Amber Rudd admitted in February that food bank use has increased in areas where UC has fully rolled out.

Alston said the government had remained in a “state of denial” about the impact of its policies, while it might appear that the Department of Work and Pensions (DWP) “has been tasked with designing a digital and sanitized version of the nineteenth century workhouse, made infamous by Charles Dickens”.

He accused the government of pursuing an agenda “to reduce benefits by every means available, including constant reductions in benefit levels, ever-more-demanding conditions, harsher penalties, depersonalization, stigmatization, and virtually eliminating the option of using the legal system to vindicate rights”.

But he also said he had witnessed “tremendous resilience, strength and generosity, and heard stories of deeply compassionate work coaches, local officials and volunteers; neighbours supporting one another; councils seeking creative solutions; and charities stepping in to fill holes in government services”.

Alston’s findings were contained in the final report on his visit to the UK last November, which was published yesterday (Wednesday) and will be presented to the UN Human Rights Council on 27 June, when the UK government will formally respond.

But DWP dismissed his conclusions, as it had done when he released his initial findings last year.

A DWP spokesperson insisted that UN data showed the UK was “one of the happiest places in the world to live” and the report was “a barely believable documentation of Britain, based on a tiny period of time spent here” that “paints a completely inaccurate picture of our approach to tackling poverty”.

The DWP spokesperson said: “We take tackling poverty extremely seriously which is why we spend £95 billion a year on welfare and maintain a state pension system that supports people into retirement.

“All the evidence shows that full-time work is the best way to boost your income and quality of life, which is why our welfare reforms are focused on supporting people into employment and we introduced the national living wage, so people earn more in work.”

But Alston accused ministers of seeking to “distract from the troubling findings of this report by misrepresenting the process behind it”.

He said his report was based on months of preparation, more than 100 consultations, an analysis of over 300 submissions, and more than 100 citations of the government’s own data and that of “renowned UK institutions”.

He added in a statement: “I traveled the country meeting with people in poverty, prominent researchers, and frontline staff at foodbanks and advice centers, many of whom said they wished the government would do the same.

“The government had an opportunity to review the report ahead of publication, yet made only eight minor changes.

“The UK is happy to use human rights to criticize other countries, but it must also reckon with its own human rights problems.”

23 May 2019


TUC Disabled Workers’ Conference: Anger over DWP’s universal credit ad campaign

Disabled union activists have condemned the Department for Work and Pensions (DWP) and media managers for pressuring jobcentre workers and reporters to take part in an “unethical and misleading” campaign aimed at air-brushing the impact of universal credit.

The National Union of Journalists (NUJ)* spoke out this week after it emerged that DWP was paying hundreds of thousands of pounds for an advertising campaign in the Metro free newspaper series as part of a nationwide campaign to “myth-bust the common inaccuracies reported on UC”.

A leaked memo – seen by Disability News Service – says the series of Metro advertising features will be part of a wider campaign “to tackle misconceptions and improve the reputation of UC” by persuading newspapers and other media to run more positive news stories and features about universal credit (see separate story).

The Metro campaign launched yesterday (Wednesday) after it was brought forward following the publication of extracts from the leaked memo.

But it was launched on the same day that the UN’s special rapporteur on extreme poverty and human rights published a report that was deeply critical of UC (see separate story), which he said had caused severe hardship and had “built a digital barrier that obstructs access to benefits”.

The DWP memo admitted that the department would deliberately not be using its branding on the features in order to disguise their origin and make them look like genuine news articles, which could breach advertising guidelines.

The first advertorials do include a line stating that they are an “advertisement feature from the Department for Work and Pensions”, but apparently include no DWP logos.

An emergency motion proposed by the NUJ*, and passed by the annual TUC Disabled Workers’ Conference this week, called for the TUC to condemn DWP for using taxpayers’ money to “defend this unworkable policy”.

It also backed journalists on regional and national newspapers who resist pressure from editors and managers to produce “unethical” stories about universal credit, in line with NUJ’s code of conduct.

NUJ delegate Natasha Hirst told the conference in Bournemouth that journalists feared losing their jobs if they resisted that pressure.

She also called for support for DWP press officers who wanted to obey the NUJ code of conduct by resisting pressure to “disseminate false or misleading information” about universal credit.

A proposed BBC documentary about universal credit – which is receiving enthusiastic co-operation from DWP – also “compromises” NUJ members who work in the BBC and members of the PCS union who work in jobcentres and do not want to be involved with the filming, she said.

Hirst said the DWP public relations campaign contravenes government guidelines on communications, which state that they should be “objective and explanatory, not biased or polemical”.

But the NUJ stopped short of backing calls by Disabled People Against Cuts to target the Metro by dumping copies of the free newspaper once it started printing the DWP adverts, as this could put the livelihoods of fellow journalists at risk, including disabled journalists.

Hirst said afterwards that NUJ opposed all boycotts of publications, and its target instead was the DWP and “those in the decision-making roles”.

She told delegates that universal credit was “responsible for worsening the mental and physical health of disabled people, pushed people into poverty and ultimately has cost some people their lives”.

And she said that what DWP described as “negativity and scaremongering” about universal credit was “actually people’s real stories, this is their truth about what has been happening to them.

“It is a gross injustice and an insult to those disabled people who shared those stories and the journalists who have ethically reported on them for the DWP to dismiss and misrepresent the appalling impact that the damage that universal credit is having on people.”

Unite’s Andy Thompson, backing the motion, said: “We have to support this campaign, we have to support our sister union the NUJ in stopping the lies that this government are going to spend taxpayers’ money in promoting.

“Why should they be able to use our hard-earned money, tax-payers’ money, to lie and deceive the people of this country?”

He said he understood why NUJ could not back a boycott of Metro but suggested that people could take “bundles of the Metro off the free distribution points and put them in skips”.

To calls of “hear, hear” from fellow delegates, he said: “We could get Metro off the shelves like we did the Sun off the shelves in Liverpool.

“Let’s make sure the government are held to account for what they are actually doing.”

Austin Harney, from the PCS union, seconded the motion, and said: “PCS has had serious concerns from the outset on the development, implementation and effect of the government’s universal credit programme.

“Our members on the frontline are now suffering as a result of the government’s chaotic welfare reforms, staff cuts and office closure programme.

“Our members see first-hand the devastating effect government policies have on the most vulnerable in society.”

GMB’s Paul Kempton said he was concerned about DWP’s plan to remove its branding from its adverts.

He said: “DWP is supposed to be accountable, it is supposed to be transparent. Our concern is about the deceitful nature of how they are going about this.”

And Equity’s Rona Topaz told delegates: “It is pure biased propaganda by this government and I strongly urge you to support this motion.”

The Advertising Standards Authority (ASA) has already received complaints about the adverts.

An ASA spokesperson said: “We’re carefully assessing the complaints and the ad campaign to establish if there are grounds for further action.

“At this stage, no decision has been made as to whether we will launch an investigation.”

A DWP spokesperson said: “It is important people know about the benefits available to them, and we regularly advertise universal credit.

“All our advertising abides by the strict guidelines set by the Advertising Standards Authority.”

She said DWP was “happy” that the adverts did not breach the government’s own communications rules.

*DNS editor John Pring is an NUJ member

23 May 2019


Newspaper ignores concerns over DWP’s universal credit ads

A national newspaper has ignored concerns about a series of “misleading” Department for Work and Pensions (DWP) adverts that are set to air-brush its “toxic” universal credit (UC) benefit system.

The Metro newspaper – run by the company that owns the Daily Mail – sparked outrage last week over its decision to take hundreds of thousands of pounds from DWP in exchange for a major nine-week series of advertising features.

It led to activists from Disabled People Against Cuts (DPAC) promising to target the newspaper with a direct action campaign aimed at preventing copies of the Metro from being read when the advertising campaign began.

Following the concerns raised about the campaign, Metro and DWP brought forward the publication date and launched it yesterday (Wednesday).

It was launched on the same day that the UN’s special rapporteur on extreme poverty and human rights published a report that was deeply critical of UC (see separate story), which he said had caused severe hardship and had “built a digital barrier that obstructs access to benefits”.

The Metro adverts are part of a nationwide DWP campaign to “myth-bust the common inaccuracies reported on UC”.

Disabled activists have repeatedly warned that UC – which combines six income-related benefits into one – is “toxic” and “rotten to the core”, with “soaring” rates of sanctions and foodbank use in areas where it has been introduced, and repeated warnings about its impact on disabled people.

But a leaked memo – seen by Disability News Service – says a series of Metro advertising features will be part of a wider campaign “to tackle misconceptions and improve the reputation of UC” by persuading newspapers and other media to run more positive stories about it.

It also admitted that DWP will deliberately not be using its logos on the advertising features, intentionally disguising their origin, which appears to be a breach of advertising guidelines.

The first advertorials do include a line stating that they are an “advertisement feature from the Department for Work and Pensions”, but apparently include no DWP or government logos.

The Advertising Standards Authority (ASA) has already received complaints about the adverts.

An ASA spokesperson said: “We’re carefully assessing the complaints and the ad campaign to establish if there are grounds for further action.

“At this stage, no decision has been made as to whether we will launch an investigation.”

A DWP spokesperson said: “It is important people know about the benefits available to them, and we regularly advertise universal credit.

“All our advertising abides by the strict guidelines set by the Advertising Standards Authority.”

A separate document, from the PCS union, has expressed concerns about a new three-part BBC documentary, which DWP said in its staff memo would provide “a fantastic opportunity” as part of its new campaign.

The PCS document warns of potential penalties that might be imposed on staff who are critical of DWP when interviewed by the BBC.

After being asked about disabled people’s concerns about the adverts, a Metro spokesperson said: “Metro takes advertising standards seriously. We are looking into the matters you’ve raised.

“Metro is a non-partisan newspaper which carries advertisements for a range of clients, including government departments and unions.”

But just two days later, her newspaper ran the first of the DWP advertorial features.

She had not responded to further questions by noon today (Thursday).

Meanwhile, a second newspaper group has also been forced to defend its role in the DWP campaign.

Reach, which publishes national newspapers like the Daily Mirror and a string of local papers, has been criticised for running at least three positive articles about universal credit, which all focus on local DWP staff praising the impact it has had locally and either dismissing or ignoring its well-publicised flaws.

One of the articles was headlined, “I Think Universal Credit is Great – Here’s Why”, and another “18 months ago I was unemployed and skint – going to the Job Centre changed my life”, both published by the Leicester Mercury.

A third article, published by the Plymouth Herald, was headlined “The truth about Universal Credit: DWP staff at the Plymouth Jobcentre reveal all”.

Two of the articles have been re-published by other newspapers in the same group, with the “I think Universal Credit is Great” article published by at least 15 other papers.

DNS tried this week to put questions about the articles and the DWP memo to Reach, but it only commented in depth on one of the Leicester stories, which was widely shared with other newspapers in the group.

The Mercury’s editor also published a lengthy rebuttal of criticism of his newspaper by the Guardian, which first reported on the leaked memo.

David Higgerson, who was described as both Reach’s chief audience officer and its digital editorial director, said of the “I think Universal Credit is Great” article: “This article reported on a different view on an issue various Reach titles have been reporting on since 2013, and also contained context about the severe challenges universal credit has caused many people.

“We have found no evidence that the sources quoted in this piece were forced to provide positive comments about their experiences working for the DWP.”

He added: “We regularly choose to syndicate articles when we believe the story will be of interest to other readers, as was the case here and with many other stories.

“Furthermore, in the last 12 months we have published more than 1,100 articles on Universal Credit across the Reach group, including national and local titles, the majority of which have been critical.

“The government regularly advertises with us and other news brands, however this is not something that would be made to bear on a journalist’s reporting.

“There was no undue pressure, financial or otherwise, to publish this story or the others raised here.”

Higgerson declined to respond to questions about the DWP memo, and suggestions that his company had become caught up in DWP’s “myth-busting” campaign.

23 May 2019


TUC Disabled Workers’ Conference: Unions back plans for national support service

Disabled trade unionists have backed plans drawn up by disabled people’s organisations that would solve the social care crisis by introducing a national independent living support service (NILSS).

The backing from the TUC’s annual Disabled Workers’ Conference provides fresh impetus for the plans, which have been drawn up by the Reclaiming Our Futures Alliance (ROFA) of disabled people’s organisations.

ROFA set out its plans at a parliamentary meeting last month, while they were also presented to campaigners attending a parliamentary event last week that was organised by the Reclaim Social Care campaign.

A series of speakers at this week’s conference in Bournemouth told fellow delegates that there was no doubt that the current social care system was in crisis.

The motion, proposed by the Unite union, blamed the austerity cuts of successive Conservative-led governments, which had produced a “failing system unable to meet current need”.

Unite’s Mark Dunk said an NILSS would include a legal right to independent living, with support free for those in need, funded by general taxation and managed by central government.

The service would be led by disabled people and delivered locally in co-production with disabled people.

Although there was some opposition from delegates from two unions to the plans, the motion was overwhelmingly passed.

GMB’s John Grant described how his disabled mother-in-law had fallen over in her home but had been unable to call for help because she could not afford the £8-a-week cost of a personal alarm.

She was forced to stay jammed between the freezer and a wall in her kitchen for more than 17 hours until her daughter found her the next morning.

Grant said the social care crisis, which meant disabled people could not afford the support they needed, was “a disgrace” and “absolutely shocking”.

Dunk said there was no doubt that social care was in crisis, with a postcode lottery of support.

He said: “It’s a lottery where no-one wins, it’s just a case of how badly you lose.

“Rising levels of charging are pushing people out of getting the care that they need.

“The system needs a radical overhaul before the situation for disabled people is allowed to sink to even more barbaric lows than it has already.

“Doing nothing is not an option. We need a national independent living support service.”

The National Education Union’s Mandy Hudson said that disabled people had a right to independent living.

She said: “It’s our right and we need to reassert that right and continue to fight for it.”

She said local authorities had lost 65 per cent of their funding because of the government’s austerity measures.

She said: “That’s why it needs to be a core provision from the state. In order to enjoy the fullness of our lives, our personal and professional lives, we need to enjoy that right to independent living.”

Wendy Willis, from USDAW, criticised the government’s decision to close the Independent Living Fund in 2015, which she said was “a cost-cutting measure with no consideration for the needs of disabled people” and had left disabled people “at the mercy of the postcode lottery of care”.

She said: “This motion is about defending our rights to live independent lives and control our own futures.”

Another delegate to support the Unite motion, Brian Aylward, from the Musicians’ Union, who lives in Northern Ireland, employs a personal assistant using direct payments.

He said: “Six hours a week means the difference between having a life and having an existence. If I didn’t have that support, I would only have an existence.”

He said the ILF closure was “an absolute scandal” and showed “the fundamental attack this disgraceful government has made on our community right from the word go”.

But two unions expressed concerns about the plans.

Cath McGuinness, from UNISON, whose members work in both the NHS and social care, said she had reservations about the motion.

She said a national service “sounds good in principle” but she questioned how it would fit in with the devolved governments in Scotland, Wales and Northern Ireland, which all have responsibility for social care.

She also questioned how such plans would fit in with her union’s support for Labour policy on seeking to integrate health and social care.

And she said UNISON would need reassurance that the “discredited” system of commissioning social care services – “where private sector companies all too often deliver a bargain basement service and exploit our workers” – would not be replicated under the new system, which would instead be “delivered and not just managed or commissioned by the public sector”.

She also said UNISON would need to know how any changes would affect members who work in the private sector.

She said: “We would battle for them to be brought back in-house by local councils.”

She told the conference: “So we support the motion but look forward to further detailed discussion on how it might be implemented in practice across the four nations of the UK.”

The Communication Workers Union (CWU) opposed the motion.

CWU’s Jonathan Bellshaw also pointed to the devolution issue, and said he believed any new system should be funded by taxes on companies like Amazon and Google, rather than general taxation.

But he also said any campaign for a new system should not wait for a Labour government, telling delegates: “Let’s take the fight to the Tories… and demand to have this now.”

The day after the motion was carried, the conference held a panel discussion on independent living.

Sean McGovern, who chaired the discussion, and chairs the TUC’s disabled workers’ committee, said social care was facing a “perfect storm”, with care packages “cut to ribbons” and disabled people receiving the “barest minimum of care” and being “imprisoned in their own homes”.

Mark Harrison, from ROFA, said the system was “broken beyond repair” and the NILSS proposals provided a “bold vision for a different way of doing things” that was “based on the lived experience of disabled people”.

He said the devolved nations would be able to decide which parts of the proposals they wanted to introduce, and that the burden of funding the new system would fall mostly on those who could afford to pay, through the UK’s progressive income tax system, as with the NHS.

Ellen Clifford, from Disabled People Against Cuts, said the NILSS plans were still being developed, but were based on “a consensus that has been building in the disabled persons’ movement for the last seven years” and “built on what was so successful about the ILF”.

23 May 2019


TUC Disabled Workers’ Conference: ‘Rail industry must be forced to act on access’

The rail industry is breaching its duties under the Equality Act by failing to ensure that vital buttons and other fixtures and fittings on different trains are always positioned in the same location, say disabled trade unionists.

Union members called on the Department for Transport (DfT) to ensure that rail companies standardise the positioning of key features on their trains, such as buttons and levers on external and internal doors and door-locking levers on toilet doors.

Their failing design policies are acting as a “major barrier” to promoting independent travel for disabled passengers, they said.

Delegates at the TUC’s annual Disabled Workers’ Conference in Bournemouth said DfT needed to ensure that its procurement policies led to a standard approach to design across the whole rail network.

They also expressed their “disgust” that Great Western Railway (GWR) had been allowed to introduce inaccessible new class 800 intercity express carriages built by Hitachi.

Delegates also backed an amendment from the RMT union that supported the need for a guard on every train, and adequately staffed stations.

John Haynes, from the TSSA transport union, said standardisation would “give people confidence” to know where to find buttons, levers and how to open doors.

He said: “Accessibility is not just about getting on and off, it’s about having the confidence to travel, to take away the barriers, to give people the right to independence.”

He said the new GWR trains only had two accessible toilets, one of them in first class, with the other in a standard class carriage that had no spaces for wheelchair-users.

He said: “That is disgraceful in this day and age. Questions need to be asked: how did that design come about?

“This motion condemns those people who allowed that train to come into service.”

He said this was “a step back 40 years” and was “a disgrace” because wheelchair-users would be forced to travel in the vestibule at the end of the carriage if they wanted access to the accessible toilet.

Andy Worth, from Unite, also called for standardised access on all trains, both new and old.

He said: “For too many years, the trains we use have had different provision and facilities.

“This makes it very difficult and confusing for disabled passengers to have a comfortable journey.

“We have been campaigning for standardised access for a long time.

“Disabled passengers can get on a train with buttons on the right-hand side and get on another one with buttons on the left-hand side.

“We need to continue to make this demand for standardised access across all trains and across all stations.

“We need to campaign to make sure DfT makes it a mandatory requirement that all rail stock and stations have standardised access provisions and facilities, including all fixtures and fittings.”

Emily Brothers, from the GMB union, said the rail industry had successfully lobbied in the 1990s for a lengthy implementation period for rail access regulations, as part of the introduction of the Disability Discrimination Act.

She said: “Twenty-odd years later they are still procrastinating and not bringing in carriages, rolling stock that are standardised or accessible, as we have seen with Great Western and Hitachi. That is not acceptable.

“It is time for disabled people to be able to freely travel when they need to, to have the support of guards on all trains, to have a way in which they can find access on the train but also to get off the train on any station and get onto another or access the local environment.”

23 May 2019


New mental capacity legislation ‘is still flawed and fails on protection’

The government’s new mental capacity act – which has now become law – is still flawed and is a prime example of how not to design disability-related policy, according to a leading disabled people’s organisation.

The Mental Capacity (Amendment) Act became law last Thursday (16 May) when it received royal assent.

It will introduce a new system, Liberty Protection Safeguards, which will replace the crisis-ridden Deprivation of Liberty Safeguards and will apply to service-users who are said to need to have restrictions placed on their liberty as part of their care but are considered to be unable to consent to those arrangements.

At one stage, Inclusion London and People First (Self Advocacy) described the bill as “potentially dangerous” as it was passing through parliament, with concerns that it would weaken disabled people’s rights.

Although some concessions were made after repeated flaws in the bill were highlighted, there are still concerns that the act fails to offer enough protection to disabled people.

The Department of Health and Social Care (DHSC) said the safeguards would have “vulnerable people at their heart, and will streamline existing care planning processes to reform a backlogged and bureaucratic system”.

It will now consult on a “comprehensive” code of practice, and said it was working with “a wide range of organisations to ensure these reforms truly promote and protect vulnerable people’s liberty”.

DHSC was repeatedly criticised throughout the bill’s process through parliament for its failure to consult with disabled people and their organisations over its contents.

It previously admitted in a freedom of information response to Inclusion London that it failed to consult any organisations led by disabled people while drawing up the 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.

Svetlana Kotova, coordinator of Inclusion London’s Disability Justice Project, said: “This act is an example of how the government should not design its policy.

“It was developed with very little consultation with disabled people and DDPOs [Deaf and disabled people’s organisations], despite the clear requirement in the UN Convention on the Rights of Persons with Disabilities.

“The act was rushed through parliament, allowing very little engagement and scrutiny by those who will be affected by it.

“Although the government was under pressure and at the end had to concede on many important issues, we are still concerned that the system introduced by the Mental Capacity (Amendment) Act does not offer sufficient protection of disabled people’s right to liberty.

“There is no duty to promote liberty and make sure support is put in place in the community [to prevent people being stuck in, or forced into, institutions].

“There is still limited access to independent reviews and not enough support to challenge deprivation of liberty decisions.”

She added: “The government has left too many important issues to be clarified in the code of practice and we are very disappointed that so far the DHSC has not set up an accessible mechanism to engage people with learning difficulties and DDPOs [on the code of practice].”

23 May 2019


TUC Disabled Workers’ Conference: Urgent action call on deaths of autistic people 

Disabled trade unionists have called for urgent action to address the tragic inadequacies that have led to the deaths of scores of autistic and other disabled people in care settings.

This week’s annual TUC Disabled Workers’ Conference in Bournemouth backed an emergency motion that criticised the government for failing to act on flaws identified by investigations into the deaths.

It came as a new BBC Panorama documentary revealed alleged abuse at a private sector care facility for autistic people and people with learning difficulties, this time at Whorlton Hall, in County Durham.

The allegations have led to the launch of a police investigation and the suspension of 16 members of staff, as well as a CQC apology for its failure to spot the abuse.

This week’s motion, proposed by autistic rights campaigner Janine Booth, a member of the TUC disabled workers’ committee, focused on the death of Colette McCulloch, who was struck and killed by a lorry after wandering onto the A1 near Bedford in July 2016.

An inquest in March this year found there had been inadequacies in her care that contributed to her death, and that she had been failed by a lack of a mental health assessment and an inadequate regime of care, although no individual or organisation had been directly at fault.

She had been living in a residential care home near Bedford, after being placed there by Sussex Partnership NHS Trust, while requests for a Mental Health Act assessment had been rejected by the local joint mental health service.

The motion backed by the conference called on the TUC to demand government action to create “an adequately-funded, publicly-run, accountable and effective care service for those who need it”.

Booth also told this week’s conference about some of the many other autistic people who have died prematurely in care settings.

They included Connor Sparrowhawk, who was left unsupervised in a bath and had a seizure and drowned.

Elric Eiffert also drowned in a bath in a private mental health facility after a seizure, while his family were not told of his death for 17 days.

Stephanie Bincliffe, died in an assessment and treatment unit after staff allowed her weight to increase to 25 stone. She had spent years alone in a padded room and died from complications associated with her weight gain.

And Michael Bennett died while in the care of a disability charity. An inquest found there had been shortcomings in his care, although the care home itself was not at fault for his death.

Booth, an RMT delegate, said more than 40 autistic people and people with learning difficulties had died in secure hospitals in three years, nine of them under the age of 35.

She said: “They are all tragic cases, but they are not tragic in the sense of being unavoidable or accidental.

“They are entirely preventable and they are the product of the under-funding in the care system, the involvement of private companies which will always prioritise profit, and a system which still sees disabled people as a burden rather than as human beings with rights.”

She called for “justice for those people we have lost and an end to the under-funding, the privatisation and the reactionary attitudes that left unchallenged will cause this to happen again”.

Austin Harney, the first autistic member of the national executive of the PCS union, told delegates that the Colette McCulloch case showed that “we do live in an institutionalised, prejudiced society towards autistic and neurodivergent people”, which he said was “outrageous”.

23 May 2019


Government agrees to review every care segregation case, after CQC report

Scores of disabled people who have been held in long-term segregation in NHS and private sector health settings will have their cases independently reviewed, the government has agreed, after a report by the health and care watchdog.

The Care Quality Commission’s interim report found more than 70 disabled children and adults – all of them autistic or with learning difficulties or mental health conditions – in long-term segregation in facilities across England.

It came as disabled trade union activists called at their annual meeting for urgent action to address the “tragic inadequacies” that have led to the deaths of scores of autistic and other disabled people in care settings (see separate story).

And a new BBC Panorama documentary has revealed alleged abuse at a private sector care facility for autistic people and people with learning difficulties, this time at Whorlton Hall, in County Durham.

The allegations have led to the launch of a police investigation and the suspension of 16 members of staff, as well as a Care Quality Commission (CQC) apology for its failure to spot the abuse.

The CQC report said one autistic man had been in segregation for nearly 10 years, while one autistic child had been segregated for more than two years, while 16 people had been in segregation for more than a year.

The CQC report concluded: “People will continue to be hospitalised and placed in segregation, and become ‘stuck’, unless a different and better system of care is put in place.”

It added: “If a period of hospital care is in the person’s interests, this must be provided close to home and last only as long as it remains in the person’s interests.”

The report includes the experiences of an autistic boy called Adam, who was admitted to a hospital at the age of 10 and was still there 15 months later, living in a segregated “seclusion room” with padded walls.

Staff sit in the corridor behind a locked door, watching him, and shout at him through a window when they want to communicate with him.

His education consists of a book held up to a window for him to read.

Staff have still not completed a sensory assessment that might help them understand how to support Adam with his sensory issues, and most of them have only received basic online training in autism, says the report.

Of the 39 people in segregation who CQC has visited so far, 31 of them are autistic.

One in three of the 39 had faced longer in segregation than originally planned because of “delayed discharges” caused by a lack of a suitable package of care in the community.

Some of the hospitals provided their staff with little or no training in autism, with any training often no more than a short module at induction or basic e-learning.

About half of the people in segregation were in wards managed by the independent sector and half were in the NHS.

The report says: “We have concluded that many of the people we have visited have been let down by health, care and education services, often over the course of many years.”

Health and social care secretary Matt Hancock this week ordered an independent review of the care of every autistic person and person with learning difficulties in long-term segregation or seclusion.

He has also agreed to set up a new group of experts to find a better system of care.

But there are already concerns about his plans after a Department of Health and Social Care (DHSC) spokesperson said the working group would be made up of “experts, clinicians, parents and carers”, apparently ignoring autistic and other disabled people.

CQC had called for the group to include “people with lived experience” of the care system.

Asked why the group did not appear to include any disabled people, a DHSC spokesperson declined to comment further as he said the panel had not yet been appointed.

CQC has also concluded that it needs to improve its own method of monitoring hospitals that use segregation.

The second phase of the CQC inquiry will now look at a wider group of settings, including low secure and rehabilitation mental health wards and adult social care services, and will also look at the use of restraint.

Hancock said: “I have been deeply moved and appalled by the distressing stories of some autistic people and people with learning disabilities spending years detained in mental health units.

“These vulnerable people are too often left alone, away from their families, friends and communities.

“At its best, the health and care system provides excellent support to people, backed by a dedicated workforce.

“But a small proportion of some of the most vulnerable in society are being failed by a broken system that doesn’t work for them.

“I commissioned the Care Quality Commission to review the use of segregation in health and care settings to tackle this issue head on.

“Today I have accepted their recommendations in full. I hope this is a turning point so everyone receives the care they need.

“I will not let these people down – they deserve better.”

DNS reported last November how Hancock announced the CQC review more than 70 years after similar concerns were first raised by civil rights campaigners, and following a series of media investigations into conditions in privately-run assessment and treatment units.

In a second report released this week, the children’s commissioner for England, Anne Longfield, said too many children were being admitted to secure hospitals unnecessarily.

She said some were spending years in institutions, rather than living in the community.

NHS Digital figures show that autistic children and those with learning difficulties had spent an average of eight months in inpatient care, while about one in seven had spent at least a year in their current hospital spell with their current provider.

The figures show 95 children were staying in a ward known to be more than 31 miles from home.

Longfield said there were about 250 such children living in mental health wards in England.

At least 75 of them had been restrained in one month – December 2018 – with a total of 820 restraints in just that month between them.

Longfield said the quality of care was “highly variable”, with one family saying their son had not been washed for six months, while about one in four children did not appear to have had a formal review of their care plan within the last 26 weeks.

23 May 2019


News provided by John Pring at