Jan 312019

Cross-government suicide prevention plan ignores DWP

Ministers have failed to include the Department for Work and Pensions (DWP) in a new cross-government plan aimed at reducing suicides, despite years of evidence linking such deaths with the disability benefits system and social security reforms.

The Department of Health and Social Care’s (DHSC) first Cross-Government Suicide Prevention Workplan details how it will work with a string of government departments and other organisations to cut the number of suicides.

But there is not a single mention of DWP, the benefits system, employment and support allowance (ESA) or universal credit in the plan, which is led by suicide prevention minister Jackie Doyle-Price.

This also means that ESA and universal credit claimants are not included among the high-risk groups mentioned in the work plan.

This is despite years of research that have shown clear links between the government’s social security reforms and suicides and have demonstrated that ESA claimants are at particularly high risk of suicidal thoughts and behaviour.

Three years ago, public health experts from the Universities of Liverpool and Oxford showed in a study that, across England as a whole, the process of reassessing people on incapacity benefit for the new ESA between 2010 and 2013 was “associated with” an extra 590 suicides.

The following year, NHS Digital’s Adult Psychiatric Morbidity Survey showed that more than 43 per cent of ESA claimants had said (when asked in 2014) that they had attempted suicide at some point in their lives, compared with about seven per cent of non-ESA claimants.

Only three months ago, Disability News Service (DNS) reported how a man with learning difficulties died a month after attempting to take his own life, following a move onto the government’s “chaotic” universal credit benefit system that left him hundreds of pounds in debt.

That followed years of secret internal DWP investigations into the suicides of benefit claimants, and two reports by coroners that linked flaws in the work capability assessment (WCA) system with suicides.

But despite these years of research and evidence, first person accounts of family tragedies, and the NHS data, the government has omitted DWP from the workplan.

Doyle-Price has repeatedly refused to highlight that ESA claimants are a high-risk group in her cross-government suicide prevention strategy, or to alert local agencies to the NHS Digital figures.

The aim of her workplan is to “drive implementation” of the national suicide prevention strategy, and it claims that it “commits every area of Government to taking action on suicide”.

The omission of DWP from this new workplan contrasts with the many organisations DHSC is working with.

These include the Department for Digital, Culture, Media and Sport; the Ministry of Defence; the Ministry of Justice; the Department for Transport; the Government Equalities Office; the Department for Education; and the Home Office.

It is also working with organisations including Public Health England (PHE), the Sport and Recreation Alliance, Universities UK, the Office for National Statistics, the prison and probation service, the Care Quality Commission, Health Education England, the Local Government Association, the Maritime and Coastguard Agency, the British Transport Police, Network Rail, the Royal National Lifeboat Institution, Transport for London, and Highways England.

Public Health England has itself been implicated in the government’s continuing attempts to cover-up links between DWP policy and suicides.

Two months ago, the government’s public health agency published the latest update of its Suicide Prevention Profile, which is designed to help public bodies draw up their own local suicide prevention plans.

The profile includes 25 risk factors for suicide, but DNS reported how PHE had ignored the proportion of the population in local areas that claims ESA as one of those risk factors, even though it was aware of the NHS Digital figures.

This week, a DHSC spokesperson refused to say why DWP was not included in the workplan and whether Doyle-Price would apologise for omitting DWP and correct that omission.

And he declined to say why DHSC was refusing – including through the workplan – to warn agencies and departments that ESA claimants were at high risk of suicide.

But he said in a statement that there was DWP “representation” on the cross-government suicide prevention strategy delivery group.

He said: “The delivery group will ensure that the suicide prevention workplan published earlier this month is implemented and continues to evolve as new actions to prevent suicide are identified. 

The Department of Health and Social Care liaises with colleagues across government departments, including DWP, on a range of matters.”

He also pointed to a section on “people in receipt of employment benefits” in the fourth annual update on the government’s suicide prevention strategy, published last week.

This section of the progress report includes a brief update on DWP’s work on mental health and employment, including its much-criticised programme to install job advisers within NHS talking therapy services; its guidance for WCA assessors on dealing with ESA claimants at risk of suicide; resources for its own staff on managing declarations of suicide and self-harm intent; and its use of secret internal process reviews when a claimant dies through suicide.

The DHSC spokesperson added: “The government is committed to reducing suicide which is why the prime minister announced the first minister for suicide prevention in the UK. 

The minister for suicide prevention is working across national and local government to implement the cross-government suicide prevention strategy and this includes collaboration with DWP.”

Samaritans can be contacted free, 24 hours a day, 365 days a year, by calling 116 123 or emailing jo@samaritans.org

31 January 2019



Minister seeks recruits for new disability network… but refuses to pay them

The minister for disabled people is refusing to pay the chairs and members of nine new regional groups she is setting up to bring the views of disabled people and their organisations closer to government.

The refusal to pay for their work and time has angered disabled people’s organisations (DPOs) and follows a string of embarrassing failures to engage with disabled people and their user-led organisations in what critics say is a clear breach of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

When the Office for Disability Issues (ODI) announced last month that it was setting up a new Regional Stakeholder Network, it said it wanted to “provide a channel for disabled people and their organisations to share their views and experiences about policies and services that affect them”.

But when Sarah Newton, the minister for disabled people, published information about the new roles last week, she made it clear that all of those taking part – including the nine chairs – would have to work for free, apart from travel expenses and funding for disability-related costs.

The information also reveals that non-disabled people and charities and other organisations not run and controlled by disabled people would be invited to join the network, potentially even as some of the regional chairs.

Newton herself – who has been repeatedly criticised for her lack of commitment to disability rights – appeared to demonstrate the lack of importance she gave to the roles by writing a ministerial foreword for the information pack of just 12 words, telling potential applicants: “Thank you very much for your interest in the Regional Stakeholder Network.”

The network will cover nine different regions of England, with each of the groups led by an independent chair and consisting of between 10 and 40 members, who will all be “either disabled people, charities or organisations that represent disabled people”.

The nine groups will only be funded to meet once a year and will have to pay for any further meetings they arrange themselves, but ODI will still expect them to provide input throughout the year via email.

The chairs will also be expected to meet with Newton “to hear about the views and priorities of the members of each group”, with this work also unpaid apart from travel expenses and funding for disability-related costs

And the network members themselves will be expected to “engage with and feed back to other local organisations”, with this work again unpaid.

Brian Hilton, digital campaigns officer for Greater Manchester Coalition of Disabled People (GMCDP), said: “The old adage ‘you get what you pay for’ comes to mind.

The government should not expect to draw upon the collective expertise of a DPO for free but that is precisely what it is trying to do.

GMCDP, like the majority of DPOs, has felt the harsh effects of austerity and as a result now has fewer staff and resources.

It therefore cannot afford to undertake ongoing work without some financial remuneration.”

He added: “Our movement has repeatedly called on successive governments to consult directly with DPOs.

However, this network fails to do so, as it is open to organisations regardless of whether they are user led or not.

The government says the network will ‘represent disabled people’s views’ but if organisations on the network are not themselves controlled by and accountable to disabled people, how can they legitimately represent us?

The government has a dreadful track record when it comes to engaging with disabled people and this latest move does nothing to improve that reputation and perhaps it is an indication of the importance (or lack of it) they place on listening to what disabled people have to say.”

Professor Peter Beresford, co-chair of Shaping Our Lives, itself a national network of disabled people and service-users, said no-one would be fooled by the government’s new network, which was “the worst kind of phoney engagement”.

He said the government was setting up its new network even though it was “well aware” that an already existing independent sector of user-led organisations was “currently being dissolved by lack of resources”.

He said: “If anything offered clear confirmation that this government is set to destroy the user involvement that has been emerging as the jewel in the crown of social policy since the 1980s, then it is its proposed regional stakeholder network.

As much-valued user-led organisations face increasing crisis and closure, so this government takes the cynical step of creating a tokenistic alternative.

It won’t add a respectable veneer to its widely condemned welfare reform policy. It won’t divert attention from the collapsing state of social care.

It is a system that should be boycotted, but even if it isn’t it will carry no credibility, while wasting vital funding that could be helping to make health, care and other public services more cost-effective, sensitive and responsive.”

Sue Bott, deputy chief executive of Disability Rights UK, was another who was critical of the failure to pay those taking part in the new network.

She said: “We can see there may be a benefit to a regional network of disabled people feeding in to government policy – if the DWP are going to take people’s views seriously.

But it sends a poor message when people involved in the new network are not going to be paid for their time and expertise.

It inevitably shrinks the available pool of potential applicants to a small number who have both the time, and financial ability, to take part.

The government’s ambition to halve the disability employment gap is welcome. It’s hard to take it seriously, though, when it demands that disabled people work for nothing.”

Dr Victoria Armstrong, chief executive of Disability North, was supportive of the idea of a new network, but critical of how Newton had gone about setting it up.

She said: “I welcome any opportunity which encourages and promotes meaningful engagement between the government and disabled people, particularly given the government’s recent catalogue of failures to engage with disabled people.

However, for that engagement to be meaningful and prompt much-needed change, disabled people and the organisations which they steer and lead must have parity of esteem in the discussion.

This means paying people and organisations for their work and ensuring that there is fair representation of disabled people and disabled people’s organisations.

Many disabled people don’t always feel that larger and non-user led national charities represent their needs and views, and so there is a risk that it will only be those bigger players contributing to this debate which will result in a ‘glossing over’ of important issues.

It would be helpful to understand more about what the government seeks to achieve with this network because a further concern is that it’s just paying lip service to important disability issues in our society when they should be at the foreground of any discussion and debate.”

An ODI spokesperson said: “The aim of the Regional Stakeholder Network is to ensure that the voices of disabled people are better factored into policy development and service design across government.

The network provides an opportunity for disabled people to share their life experience and provide insight into the barriers they face in day-to-day life.

The role [of the chair] will not be paid because we want to ensure the independence of the chair.

Expenses for attending meetings and any accessibility needs will be paid for.

We are running a fair and open recruitment process and would especially welcome applications from disabled people and disabled people’s organisations.

We expect that the majority of chairs and members will be disabled people.

However, we do not want to exclude people that don’t have a disability and feel that they can bring valuable knowledge and experience to the network.

This could be people that have personal experience such as a parent of a disabled child or partner of a disabled person.”

Earlier this month, campaigners were left “shocked and appalled” by the government’s decision to hold a workshop on the barriers facing disabled people without inviting a single DPO to take part.

Last week, a coalition of DPOs wrote to the Cabinet Office to express their “deep dismay and concern about the total lack of engagement” of DPOs in the workshop.

In November, the Department of Health and Social Care wrongly insisted that it had been complying with the UN convention by consulting on its mental capacity (amendment) bill only with non-user-led charities like Mencap and Sense.

And in August, 14 prominent disabled leaders were forced to write to Newton after she refused to meet a coalition of DPOs to discuss the UK’s failure to implement the UN convention.

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 UN committee on the rights of persons with disabilities included in its general comment number seven, which was adopted in September.

31 January 2019



Capita closes PIP claim after woman complains about use of 25-year-old report

A disabled woman who raised concerns that her benefits assessment was set to be based on a report that was a quarter of a century old had her claim closed after a government contractor described her as “aggressive” and “non-compliant”.

The woman, Mary*, from Northern Ireland, secretly recorded the face-to-face assessment, which showed her raising concerns about Capita’s intention to complete a report on her personal independence payment (PIP) claim without waiting for up-to-date evidence from her GP.

But although she did raise concerns during the 30-minute meeting, the recording shows her remaining calm and polite – although firm – and apologising to her assessor if she felt offended by her criticisms of Capita and the PIP system.

The assessor, a nurse, stressed that she had not been offended, and could be heard telling a manager on the phone that there appeared to have been “quite a lot of significant changes to [Mary’s] medical conditions” since the 1994 report.

She also told Mary that she was not being unreasonable in raising concerns about such an old report being used as evidence of her PIP eligibility.

Mary has been claiming disability living allowance (DLA) for more than 25 years, but her health has deteriorated in recent years, and she has also survived stage three breast cancer since the 1994 DLA report.

The nurse can be heard on the recording repeatedly telling Mary (and her husband) that she would have to base her assessment report only on Mary’s self-completed PIP form, the assessor’s report on the face-to-face assessment and the 1994 DLA report, and advising her to postpone the assessment until Capita received the GP’s report.

After Mary agreed to the postponement, and despite the nurse’s comments, Capita subsequently told Mary it had decided to close her file, claiming she had been “aggressive and non-compliant” during the assessment.

Mary – who carried out advice and tribunal work for more than 20 years – was appalled when she found out her claim had been closed, because she had been assured that she would have another face-to-face assessment once her GP report arrived.

She has now lodged a complaint with Capita.

Mary said she believed Capita had behaved in a “dishonest manner” and that there was a “hidden agenda to get claimants off PIP”.

She said Capita was “quite clearly in breach of the legislation” by trying to use a 25-year-old report to decide her eligibility.

She said: “I wonder how often this has happened. How on earth are they getting away with this shameful practice?”

Mary said she would like to see GPs paid to decide PIP eligibility.

She said: “The PIP system is flawed. No account is taken of medical conditions. They are not interested.

Assessments are cruel and degrading, where you have to prove you are unwell even when they have medical reports.”

She said the PIP system in Northern Ireland was “awful”, and because the devolved Northern Ireland Assembly was still not operating, there was “no-one to turn to”.

Mary’s case is the latest example of apparent serious malpractice by the companies employed to carry out PIP assessments across the UK, and it appears to provide further confirmation of such concerns in Northern Ireland.

It also raises fresh concerns about how the assessment companies react when disabled claimants complain about how they are being treated by the system.

In November, Disability News Service (DNS) reported how Atos, the other discredited company contracted to carry out the assessments, threatened to call the police after a claimant asked about the mental health qualifications of the nurse who was assessing his eligibility for PIP.

Following Mary’s concerns and questions raised by DNS, Northern Ireland’s Department for Communities (DfC) sent her case back to Capita to reconsider its decision, and either arrange another face-to-face assessment or carry out an assessment based only on paperwork.

A Capita spokesperson refused to say how it justified its treatment of Mary and misreporting what happened in her assessment, or to say if it would apologise to her.

But she said in a statement: “Our trained disability assessors are committed to delivering an empathetic and efficient service for the people of Northern Ireland and follow a strict code of practice.

We are currently processing this case to complete the assessment.”

A DfC spokesperson refused to answer questions or comment on the case.

*Not her real name

31 January 2019



MPs praise campaigners who received threats and abuse over access court cases

MPs have heard how disabled campaigners were abused and threatened, while one was even reported to the police, after taking legal actions against service-providers for disability discrimination.

Esther Leighton and Doug Paulley were praised by MPs for their campaigning work, after giving evidence yesterday (Wednesday) as part of an inquiry by the Commons women and equalities committee into enforcement of the Equality Act 2010.

The committee is particularly looking at the enforcement role of the Equality and Human Rights Commission (EHRC), which was criticised by both Leighton and Paulley in their evidence.

Leighton told the committee how the defendant in one case was so outraged by a legal letter she had sent him that he reported her to the police, which interviewed her under caution for alleged blackmail, which has a maximum prison term of 14 years.

She was subsequently advised by a police officer “not to write upsetting letters to businesses”.

Paulley told the MPs of the abuse and even death threats he had received after taking legal actions following discrimination, and he criticised the EHRC for failing to provide support after his high-profile Supreme Court victory over First Bus on access to the wheelchair space in buses.

He said he had at times needed support from mental health crisis teams “as a result of the unpleasant treatment and threats” he had received after taking legal cases.

Disability News Service reported last year how City of London Police was forced to launch a major review after refusing to treat online attacks against Paulley as disability hate crimes following the January 2017 First Bus ruling.

Leighton, a wheelchair-user, said she had taken a series of disability discrimination cases against Caffé Nero over access failings in individual branches, but on each occasion the company settled the case without introducing changes across the chain.

She told the committee that she was “outraged” that disabled people were still having to fight to secure access improvements, and told the MPs that she had visited a branch of Caffé Nero that morning that had still not bought a ramp she had asked them to provide two months ago.

She said such examples of repeated discrimination were “upsetting cumulatively” and “horrible in the way that they pick away at your ability to be a full member of society”.

But she said EHRC did not fund such individual cases, and there was no possibility of securing legal support from solicitors through a “no win no fee” arrangement, so they usually had to be taken on by individual disabled people as “litigants in person”.

Leighton said she wanted there to be a way to negotiate binding agreements with service-providers like Caffé Nero so that “they don’t pay me off every time and we never end up in court” and instead “they do something about every Caffé Nero in the country and prove to me that they’ve done it and then I’ll go away.

I would like that to be public so other coffee chains can see that that was really important.”

She said that was the sort of action the EHRC should be taking.

Paulley said he believed there was a “very substantial difference” between the EHRC and the former Disability Rights Commission (DRC), which merged with other equality bodies to form the EHRC in 2007.

He said: “I felt the DRC were much more proactive, approachable and useful than the EHRC has turned out to be.”

Although EHRC funded and supported his First Bus case, he said they “lost their mojo” after the merger and “do not seem to be anywhere near as proactive” or supportive of disabled people.

Both Paulley and Leighton called for more high street access legal cases to be taken.

Paulley said: “You just have to walk down the high street to see instances of discrimination all the time.

There are so many places that I can’t get in.

It’s because there aren’t enough cases being taken that service-providers are either not aware of their obligations [or believe that there is not] any significant chance that they are going to be taken to task for them.

So what we need is a lot more cases being brought.”

He added: “It doesn’t work as an enforcement system and the evidence of that is that so many providers ignore their obligations with impunity, or [do not even know] what their obligations are.”

At the end of the evidence session, three members of the committee, the Tory chair Maria Miller – a former minister for disabled people – and the Labour members Jess Phillips and Sarah Champion, praised the duo, with Champion describing their campaigning work as “very impressive”, and Miller adding: “On behalf of the whole committee I’d like to thank you for all the work that you do… we are immensely grateful.”

31 January 2019



Your right to peaceful protest is under attack, disabled activists are warned

Disabled activists have been warned that their right to peaceful protest is under attack, as police forces across the country appear to be attempting to restrict the rights of certain groups of protesters.

The warning comes as concerns mount over the admission by Lancashire police that it passed information and video footage of disabled anti-fracking protesters to the Department for Work and Pensions (DWP), in an attempt to have their disability benefits removed.

Last week, Disability News Service (DNS) reported that DWP was refusing to say which other police forces have passed such information to the department.

Jonathan Bartley, co-leader of the Green party, said this week that this secrecy was “deeply concerning”.

He told DNS: “The right to peaceful protest is under attack in Britain today, and this is just one example of how activists are being scared into silence.

There is a clear public interest in knowing what information has been passed from police forces to the DWP and I urge both sides to provide quick and full transparency.”

Further concerns have been raised by an academic who has spent years researching the policing of anti-fracking protests.

Dr Will Jackson, a lecturer in criminology at Liverpool John Moores University, warned of increasing attempts by police forces to define certain groups of protesters and types of peaceful protest action as “illegitimate”.

He told DNS that forces were defining political activists as “extremists”, not because of the actions they were taking during those protests but because of the policies they were opposing.

There has also been repeated testimony that groups of protesters – such as younger people, older people, women and disabled people – are being “marked out for particular treatment by the police”.

He pointed to the policing of anti-fracking protests at Preston New Road, near Blackpool, in Lancashire, where officers have appeared to target disabled protesters.

And he said the admission by Lancashire police that it had passed information about disabled protesters to DWP echoed evidence that women who had attended anti-fracking protests at Barton Moss, Salford, had been visited at the camp by social services and questioned about their suitability as parents because they were there with their children.

He said this seemed to fit with a wider picture that police forces were defining certain groups and types of protest as “illegitimate” and believed that “some people should be at a protest and some people shouldn’t”, which he said had serious implications for the right to protest.

He said that groups that seek “to be disruptive in a peaceful way” through direct action and to “disrupt and delay fracking operations” were now being viewed by police as “illegitimate”.

Jackson said disabled anti-austerity activists were right to be concerned, with police at local and national level apparently taking up the role of “defining what is and is not acceptable”.

He said: “The way that these official police voices are defining the distinction between a protester and an extremist has implications for all forms of protest.”

He added: “That doesn’t always fit with what people are doing, it seems to be related to what movements are opposed to.

So anti-austerity protests which are targeted at a very central plank of government policy, I think people in those movements would be right to be looking at what is happening at anti-fracking protests and concerned about the implications.

There are very real concerns about how groups are being defined as legitimate or illegitimate.”

Last month, Andy Greene, a member of the national steering group of Disabled People Against Cuts (DPAC), said he expected the police tactics used against disabled people at anti-fracking protests to be “rolled out across the protest movement” over the next year as the country saw a likely increase in political volatility around issues such as anti-fracking, anti-austerity and Brexit.

Greene said he believed it was “only a matter of time” before the tactics being applied to disabled people at Preston New Road were seen on the streets of London.

Jackson said that the Association of Chief Police Officers (now replaced by the National Police Chiefs Council) had explicitly defined activism as a form of criminality*, and so there was “a danger that anything that goes beyond simply standing stationary and waving a banner is seen as being illegitimate”.

He said: “We seem to be seeing a development of a police approach in response to these protests which has implications for the right to protest across the board, I think.”

He said that anti-fracking protests had also been labelled as “extremism” in police training sessions provided as part of the government’s Prevent counter-extremism programme.

Jackson has been researching the policing of anti-fracking protests since late 2013, and is part of a team, which includes researchers at the University of York and the School of Advanced Study at the University of London, who have been interviewing anti-fracking protesters across the country, including at Preston New Road.

They are hoping to produce the first draft of a national report early this year.

Jackson said that issues raised over the last five years about the policing of anti-fracking protests had implications for the fundamental right to protest in a liberal democracy and the right to protest in the UK under the Human Rights Act.

He said it was right for these concerns to be raised so that people “are aware of what is going on”.

He said: “Our work doesn’t seek to put people off protesting, but we are seeking to document what is happening so people can make informed decisions about their involvement.

It doesn’t necessarily mean that people don’t go but it means that people will go to those protests with an understanding of what’s happening.

It’s crucial that people know what is happening and also that people can go to these protests knowing their rights.”

*Policing Unacceptable Protest in England and Wales: A case study of the policing of anti-fracking protests, by Will Jackson, Joanna Gilmore and Helen Monk, in Critical Social Policy

31 January 2019



DPAC warns Labour to rethink support for universal basic income

Campaigners are warning the Labour party to rethink its support for a radical new benefit system because of risks that its introduction would further isolate and impoverish disabled people.

In a new report, UBI: Solution or Illusion? The Implications of Universal Basic Income for Disabled People in Britain, Disabled People Against Cuts (DPAC) says support for universal basic income (UBI) has been growing steadily among those both on the left and the right of politics.

Labour’s shadow chancellor John McDonnell has expressed some support for UBI and has suggested that the party’s next general election manifesto is likely to include a commitment to a UBI pilot.

The Scottish government is also providing funding for possible pilot schemes to be run by four local authorities.

UBI is a regular cash payment made to every citizen regardless of their income, paid without any requirement to be in a paid job or looking for work.

Many see it as a solution to the UK’s flawed and much-criticised social security safety net, which has seen years of cuts to support and an increasingly-harsh sanctions and conditionality regime.

DPAC says this interest in UBI has intensified with the introduction of universal credit.

Supporters of UBI also see it as the answer to the “stigmatisation of social security, the scapegoating of benefit claimants and associated hostility towards disabled people”, says DPAC in its report.

But the DPAC report warns that too little attention has been paid to the implications of UBI for disabled people.

The report warns that it is likely that housing benefit and disability benefits would remain outside a UBI system.

This would mean the need for continuing disability assessments, and the risk that the high cost of running a UBI system would mean further cuts to benefits and services relied on by disabled people, such as social care support.

DPAC’s Ellen Clifford, author of the new report, said: “While we would be in favour of tax rises to fund welfare provision – particularly corporation tax and a progressive rise in the higher rate of income tax – the use of this for a UBI rather than more traditional forms of disability and unemployment support would mean much of the benefit flowing back to employers rather than those in most need.”

Two other grassroots organisations of disabled people, Black Triangle and WinVisible, have this week added their voices to the concerns raised by DPAC about UBI.

Clifford’s report concludes that implementing UBI “risks detracting attention and resources from the urgent task required to overhaul the disability benefits system and make it fit for purpose”.

It adds: “Given the history of disabled people’s exclusion and the marginalisation of our issues it is reasonable for disabled people to fear that attention and resources dedicated to the task of implementing a UBI will be at the expense of affecting the level of change needed to ensure disabled people receive adequate support.”

There are also concerns, says the report, that a more flexible employment market ushered in by UBI, with greater job insecurity and the likelihood of poorer working conditions and lower wages for lower-paid workers, would further disadvantage disabled workers.

They also say that right-wing versions of UBI are seen as a way of saving money by avoiding spending on a decent living wage and social protection.

And the report says that pushing for UBI risks deferring demands for full reasonable adjustments at work for disabled workers, and “full and unconditional support” for those unable to work, while “ending up with a system that is more of a helping hand for employers than for disabled people”.

The report says DPAC’s concerns are born out by the results of pilot UBI schemes that have been run across the world, including one in Finland that has just ended, but has not yet been assessed officially, which critics say has forced unemployed workers into bad jobs while undermining unions, wage equality, and the welfare state.

And it says concerns have been raised about the proposed pilot schemes in Scotland, including the cost and potential negative impacts on disabled people, including likely cuts to other social protection schemes.

But the report does say that a pilot scheme in India proved successful, with disabled people benefiting more than others, but mainly because “many of those benefiting had received no previous support at all”, which was “very different to what would happen with the introduction of a UBI in Britain to replace existing social security payments”.

Clifford said it was worrying how marginalised disabled people had been in the debate around the introduction of UBI.

She said DPAC’s message to Labour was to include disabled people in the debate and to consider how they would be affected by the introduction of UBI.

Clifford said it was important to have the debate about UBI as there was growing support for the idea that universal credit would have to be scrapped, and that UBI could be the system to replace it.

She said: “We have seen with universal credit and personalisation how what can sound like progressive ideas can end up badly for disabled people in practice.

We remember how the personalisation pilots actually went very well.

It isn’t always possible for pilots to capture the full implications of policy roll outs so we are concerned that Labour’s proposed pilots will not on their own be enough to avoid a future situation where UBI is fully rolled out and ends up widening rather than reducing inequality.”

The report could surprise some of DPAC’s critics, who often assume that the grassroots group will support the left-wing policies of the Labour party under Jeremy Corbyn and McDonnell.

But DPAC has repeatedly made it clear that it is not aligned to any political party and that its loyalties lie instead with those fighting for disabled people’s “full human rights and equality”, and against government austerity measures “which target the poor while leaving the wealthy unscathed”.

John McArdle, co-founder of Black Triangle, said existing experiments with UBI appeared to “have been driven by a right wing agenda that undermines workers’ rights”.

He said: “On the face of it, UBI seems to be progressive but the devil is in the detail.”

He said Black Triangle echoed DPAC’s call for the immediate focus to be on “removing conditionality and sanctions and the hostile environment for disabled people”, replacing the UK government’s disability assessment regime, and co-producing with disabled people a social security system that “will again be fit for purpose”.

Claire Glasman, from WinVisible, which supports and campaigns for disabled women, said the problem with UBI was that it was not based on need and – like universal credit – did not recognise the importance of unwaged caring work.

She said: “We are very worried that it is going to be a way of cutting benefits based on need: the needs of disabled people, the needs of mothers and children, the needs of bereaved people, which specific benefits exist to cover.”

31 January 2019



Last-ditch appeal to new Welsh first minister over independent living scheme

A disabled campaigner has sent an 80-page dossier of evidence to the new first minister of Wales in a last-ditch bid to persuade him to abandon plans to close the Welsh government’s independent living grant scheme.

Nathan Lee Davies has written to Mark Drakeford with just two months left until the planned closure of the Welsh Independent Living Grant (WILG), which was itself set up as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.

Davies, who has led the Save WILG Campaign, told Drakeford in an open letter this week that closing WILG would leave disabled people with high support needs “at the mercy of cash-strapped Local Authorities who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow”.

He said that local authorities “seem to be treating disabled people as a burden”.

Davies points out in the letter that Drakeford had promised – during his successful campaign to lead the Welsh Labour party last year – that if an independent evaluation of the WILG closure showed the new system not working as well as the old one then he would be prepared to reverse it”.

WILG was set up by the Welsh government – with UK government funding – as a short-term measure to support former ILF recipients when the fund was closed in June 2015.

But the Welsh government is now closing WILG and transferring the funding to local councils, and by April the 22 local authorities will be solely responsible for meeting the support needs of all former ILF-recipients in Wales.

Davies said the “deep dive review” of cases in which WILG recipients were having their support cut was “full of errors” and had failed to consult the disabled people who will be affected.

He pointed to his own experience at the hands of his local authority, Wrexham council, which he said had treated him “abysmally”.

Davies, who has a life-limiting condition, said that the process to reassess his support needs, due to end in September 2018, had still not been completed and was having “a negative impact” on both his physical and mental health.

He described how his social worker had laughed when he suggested he needed 24-hour support and told him that no-one in the borough received that level of support.

He said that the lack of overnight support in his current social care package meant he had to stop drinking at 8pm at night and get ready for bed at 10pm, and often had to call his 68-year-old father to assist him in the night, even though he lives a 10-minute drive away and has arthritis in both hands.

The dossier, which has already been shared with the deputy health and social services minister Julie Morgan, includes a description of a day in his life, from last January, showing the poor level of support he already receives – even before the closure of WILG – and the pain and indignity this exposes him to, as well as the lack of choice and control in his life.

Davies says: “It is 2018 and I am still being treated like a second class citizen. 

I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours that I did in 2010 when I first began independent living.”

He updated this by posting a new blog yesterday, showing that little had changed in the last year.

In the dossier, he warns the Welsh Labour party: “I do not want to spend the last days of my life completely unnecessarily fighting against the party I have defended and campaigned for across many years.

But I will if I have to. Please don’t make me.

The dossier also includes a letter from a director of Disability Wales, Trevor Palmer, in which he says the planned WILG closure has “created serious disruptions” to his life, with local authority “incompetence and lack of understanding” that has led to his support package being “substantially” reduced.

A Welsh government spokesperson said: “We believe that disabled people’s ability to live independently should not be compromised by any changes to the way in which support is arranged for those people who previously received payments from the WILG.

The first minister has just received Mr Davies’ open letter regarding the WILG and will carefully consider the detailed points it makes.

He has asked the deputy minister for health and social services to consider what further action may be necessary to ensure disabled people in receipt of the WILG are not adversely affected by this change.

The deputy minister has provided Mr Davies and the National Assembly’s petitions committee with details of the deep dive review.

She also met Mr Davies at his home to hear his concerns and discuss the issues raised in his dossier.”

He said the deep dive review had seen the 22 Welsh local authorities audit all cases where they intended to cut the WILG element of people’s support.

This found planned reductions in about 157 cases, and increases in support in a similar number, out of 1,174 people.

He claimed that the cuts had taken place because “some people had developed a need for healthcare rather than social care while some, due to their support being provided in a different way or being of a different type, had a reduced need for care overall”.

He accepted that two questionnaires, commissioned from the All Wales Forum of Parents and Carers of People with Learning Disabilities, had had a low response rate, but he said that responses to it “have been positive about the way assessments have been undertaken and the outcomes people have received”.

Charlotte Walton, Wrexham council’s head of adult social care, said: “We cannot comment on any individual’s care and support needs. 

However we do not accept the allegations being made. 

We have carried out all of the WILG reviews in a person centred and inclusive manner and working with the individual recipients of the fund [has] enabled them to achieve positive outcomes from the reviews.”

Davies said he would now push for a meeting with the first minister.

He said: “I am not going anywhere and will continue to fight this until justice is served.”

31 January 2019



Landlord discriminated against disabled woman over flat alterations, court rules

A court has ruled that a disabled woman faced unlawful disability discrimination after her landlord refused to allow her to make vital adaptations to her flat.

Lawyers believe that the ruling by Cardiff County Court could provide important legal clarity for other disabled homeowners – and those who rent their homes – who want to make adaptations to their own properties but are prevented from doing so by their landlords.

In a case supported and funded by the Equality and Human Rights Commission (EHRC), the court heard that Stacey Poyner-Smailes, who has a mobility impairment, had needed to make changes to her flat in Clewer Court, Newport, including moving her kitchen and altering her bedroom.

But Poyner-Smailes and her husband, who owned the leasehold for the flat, were prevented from making the adaptations because the lease they had signed prevented such alterations.

The landlord, Clewer Court Residents Ltd – which represents fellow leaseholders – refused them permission to ignore that part of the lease agreement.

As a result, they were forced to leave the flat.

Now a county court judge has ruled that the company discriminated against Poyner-Smailes because the alterations she wanted to make were reasonable adjustments under the act.

The court also found that she had been harassed by the company at a meeting held to discuss the proposed alterations, another form of disability discrimination under the Equality Act.

A further hearing in April will decide on the “remedy and compensation”, an EHRC spokesperson said.

EHRC said it had funded the case to clarify the law and ensure that Poyner-Smailes, and other disabled people with landlords, were able to make reasonable alterations to allow them to live independently in their own homes.

Although it will not set a binding precedent, because it is a county court judgment, the commission believes that it will still have “persuasive value” for other similar legal actions.

Last year, an EHRC inquiry concluded that disabled people faced a “hidden crisis” and had been left “demoralised and frustrated” by a chronic shortage of accessible housing, leaving them trapped in unsuitable homes.

Poyner-Smailes said: “All that we have sought throughout this matter is for me to be able to live independently and use my home as anyone else would.

We are relieved that today’s judgment will finally allow me to do this and will protect other disabled people from going through what we have.”

Rebecca Hilsenrath, EHRC’s chief executive, said: “Your home should be a place of safety and security, not a source of anxiety and restriction.

We are pleased the court has clarified that landlords must change lease agreements to allow alterations that are reasonable and necessary.

This issue affects many disabled tenants and we hope that today’s ruling will go a long way to ensure that disabled people can enjoy their right to independent living.”

Sarah Conroy, a partner with legal firm Weightmans, which represented Poyner-Smailes in court, said the judgment provided “crucial clarification on the law, and we hope that it encourages a wider shift for disabled leaseholders allowing them to enjoy independent living in their own home”.

The firm of solicitors representing Clewer Court Residents Ltd was approached for a comment but had not responded by noon today (Thursday).

31 January 2019


News provided by John Pring at www.disabilitynewsservice.com


 Posted by at 16:01
Jan 312019

Picture showing the front cover of the report with the title "UBI: Solution or Illusion? The implications of Universal Basic Income for Disabled People in Britain", the DPAC logo and a pile of money including a £5 note and some change.

Universal Basic Income (UBI) – a regular cash payment made to individuals without means testing or conditionality – has been described as an idea whose time has come, supported across the political divide from free market libertarians to left wingers attracted to the idea of emancipating the working classes from wage labour. With disabled people as one of the groups at the sharp end of “welfare reform”, DPAC are less convinced that UBI can deliver the solution so desperately needed to fix the social security system and fear that the introduction of UBI could further disadvantage those who have suffered the most since 2010. Today we are launching our report “Universal Basic Income: Solution or Illusion” based on a longer paper we published on the same subject last year.

Download the report here: UBI – Solution or Illusion


A basic income will not cover the extra costs of disability and therefore a system of disability benefits will still be needed alongside a UBI. Disabled people are concerned that the need to finance universal basic income payments could lead to even more pressure to save money by restricting eligibility than under the current system. With the crisis in social care having taken disabled people’s quality of life dramatically backwards, there are also concerns that the introduction of a UBI will prevent a reversal of cuts that are leaving increasing numbers trapped in their own homes without access to food, water or the toilet for hours at a time, day and night.

The report comes at a time when there is growing support for the idea that Universal credit cannot be fixed but must be scrapped. That leaves us with the question of with what to replace it. The idea of a UBI – with no means testing or conditionality – sounds attractive but the reality would be very different. A central principle underpinning any social security policy development must be meaningful engagement with the lived experience of those affected. The “test and learn” approach of Universal Credit has, as identified at the end of last year by the United Nations’ special rapporteur on extreme poverty, made guinea pigs of the most disadvantaged members of society. The disastrous impacts of UC were entirely predictable but ignored. Transformation of the social security system won’t succeed through top down policy making: it has to be designed to meet need and to do that you need to listen to those at the grassroots.

Disabled people have experienced to our detriment through UC and the personalisation of social care how what can be presented as progressive ideas can in practice affect widespread harm. We must not repeat this mistake through UBI.


 Posted by at 14:29
Jan 302019

Following on from the Independent Living Strategy Group report into charging for social care we’d like to get more information on charging and how it is affecting people.

Please could people fill in details in the form below.

Could you also email us at mail@dpac.uk.net if you’d be willing to speak to the journalist Frances Ryan about charging and it’s impact on your lives and support.

We are also looking for someone who is willing to be in a video about the negative impact charging has on their ability to access the care and support they need or who has been left in debt by these charges for use in a separate campaign. Again please email us at mail@dpac.uk.net if you are interested.

 Posted by at 16:45
Jan 252019

If you want to add anything from your own local group please email us. Real and systematic change can only be achieved if we organise and fight togetherbut Disabled People deserve rights and to live without the gripping fear many have felt for the last 8 years.


DPAC Ceredigion

Following our protests in town and outside Cardigan job centre opposing the roll out of Universal Credit, more people got in contact to ask for support and advice regarding their benefits. Working with our local MP Ben Lake, the food bank and Croeso housing, we had a UC drop in advice surgery in Aberystwyth, which will be repeated next year in Cardigan. Three of us went to meet Leanne Wood when she came to Cardigan and raised our concerns about the roll out of UC. We have been regularly handing out flyers around town and engaging with people to raise awareness of the rollout of UC and putting More people got in contact with us, for advice on PIP claims, and im pleased to say, that all those we helped this year were successful with their claims or appeals. Through the sales of the Welsh Grannies, we have funds available now to go towards organising our future campaigns, and helping others in our community during sanctions, waiting times and late payments etc. We have had regular social meet ups, and hope to have many more in the future. Lets keep fighting the system best we can, lets be there to support each other along the way and keep hold of the friendships we have made through DPAC. Its going to be a tough year ahead with UC and Brexit affecting us all. Lets continue to help each other through this in solidarity. Thank you all for your contributions this year. To CPA people for travelling so far to campaign together, to Jon Plumpton for those amazing lollipops and posters you printed for all the demos, for those who turned up on cold mornings to stand outside the job centres, to all those helping us with translations so that we can have bi-lingual protests, and most importantly our strong bond of friendship that keep this group running.

Berkshire DPAC

Our main activism in 2018 centred around Reading Borough Council’s proposal to scrap concessionary bus passes. We eventually won in relation to passes for disabled people and for companion passes too. There were many elements to the win apart from our successful demos in town and media coverage: having information coming out from council sources as to what had been stated in their budget; support from the local Trades Council who bolstered our demos and helped spread the word and also support from Reading and District Labour Party, which voted to instruct the council to ditch the proposal. But this has been a long process and still continues, as their latest move has been to go back to a consultation on cancelling passes for pensioners and also charging for Readibus rides, which were previously free.

We also began to try to gather information about the local hospital for patients diagnosed with mental health problems as the reports coming out of there are awful.

Norfolk DPAC


March – National Day of Action – protest to stop and scrap universal credit outside Norwich City Council.

May – DPAC Norfolk participated in protest against cuts to mental health services in Norfolk and Suffolk at Norwich City Football Club

September – DPAC Norfolk part of forming Norfolk Against Universal Credit (NAUC) a campaigning coalition of organisations to stop and scrap

October – 7 members participated in the action at the Tory Party conference in Birmingham

October – protest at Norwich job centre to mark the first day of the rollout of Universal Credit – over 50 people attended


October – DPAC Norfolk organised a rally and march to Stop and Scrap Universal Credit.  Over 150 people marched around Norwich city centre.




December  – Public Meeting to Stop and Scrap Universal Credit – over 50 people attended the meeting at Norwich City Hall

Glasgow DPAC

here is a brief account accompanied by pictures of what has been a hectic year (I can’t promise chronological acuracy😀) for DPAC GLASGOW.

The backbone of our work has and continues to be resisting government attacks on the rights and dignitary of disabled people through changes in the benefit system we have held monthly pickets outside maximums offices against work capability assessments.


We have also been proud to support other campaigns ie the struggle for equal pay for working women of Glasgow city council. I was privileged to be the only man allowed to speak at one of their lobbies.

We also stood in solidarity with the get Glasgow moving campaign when they handed in their petition to Glasgow city council in July.


One of the highlight was when 3 of our members went down to Birmingham to tell Theresa May and the Tory conference what we think of them.


My personal highlight was our participation in the national day of action against universal credit we organised an excellent street stall in Argyll St and got a great response. we also made a couple of trips through to Edinburgh to the Scottish parliament on the first occasion to hear the evil Esther Mcvey answer questions before one of the parliamentary  committees  and on another occasion to meet Shirley Anne Sommerville.

Like everyone else we expect to be even busier this year.


I’d like to finish this somewhat potted annual report  by paying tribute to Marion Nisbet co founder and stalwart of DPAC GLASGOW for a number of years who has decided to move on to other things a huge THANK YOU Marion




Northants Disabled People Against Cuts


2018 has been a very difficult year for Northants dpac I’m pleased though we have managed to ensure Disabled Peoples anger towards the cuts and continuous attacks has not waned, A number of our members have had health issues which has impacted on our work. Individual people have continued to support people with pip, esa and other problems. Through our media work we have developed good media relationships with Northampton chronicle, echo, and Nene Enquirer .


We supported save Northants services rally on the 17th FEB 2018. As Northamptonshire County Council has been in financial trouble due to national govt cuts, we have been able to get national media coverage of Disabled Peoples experience of Cuts.


We have built up a good relationship with IWW branch locally We are actively involved in Save Northants Services umbrella organisation. We are involved with Northants Direct Action on actions and campaigns.


We supported tories out of Brum conference protest/action. We are building distant links with Labour Party locally for future work.


We joined a noisy picket of Northants Tories Gala Dinner with the guest of dishonour Savid Javid home secretary. We continue to be an irritant in the fight against cuts in Northants.




 Posted by at 20:55
Jan 242019

At last we have a belated annual round up setting out just a few of the things we supported and organised in 2018. DPAC was always set up so that if one person was ill or unable to take part in the day-to-day running of things it would still function but 2018 threw up more problems health and family wise for most of us than anyone could have envisaged. And although not all our problems are now solved we’re all still here and functioning – if a little slower than usual.

Once again we want to thank our many supporters and allies for their help in many ways from attending physical and on-line events, producing memes for our use, donating to help us remain completely independent and help others to attend protests and meetings and a myriad of other things. Thanks once again to Paula, Louise and Keith for helping with stalls at a variety of events these not only raise money for DPAC but also promote us as an organisation.



We’re very grateful to the disabled people who travelled so far to attend our Festival of Resistance during the summer and it was great to meet activists from around the world.

As usual last year we were involved supporting a wide range of events and protests organised by ourselves and others where the impact would have a direct and negative effect on disabled people. This included working with BASW and the Anti Austerity Action Group, RMT, Transport for All and ABC Commuters around transport issues especially driver only operated trains, Fuel Poverty Action Group, Winvisible, No More Deaths on Our Streets, Alliance for Counselling and Pyschtherapy,against IAPT therapies, Supporting NHS marches and anti-racists marches to name but a few.

Members of the steering group have continued to speak at a wide range of events on various topics throughout the year. We’re grateful to them for giving their time and energy to do so and are proud to have them represent us at such times. Paula in particular seems to have been very prolific last year speaking at about 10 major events.

We’ve continued our work with the media and tried to highlight the ongoing injustices and problems that disabled people face in the UK today.

We also had a voter registration drive for the mayoral and council elections because it is so important that disabled people do use their vote to seek change at all levels of the political spectrum.


Our initial planned Day of Action to Stop and Scrap Universal Credit had to be postponed due to the awful weather we had last March and was re-organised to take place in April when nationally we had a day out to parliament – again. You can watch the video at this link


We organised High Court vigils with Winvisible and Inclusion London for the Universal Credit case against the loss of Severe and Enhanced Disability Premiums in UC. Fortunately the case was won although of course the government tried and failed to wriggle out of paying disabled people more.

Most protests were supported by on-line actions and we also had an on-line protest against the Spring Budget. Sadly twitter has now stopped people using tweet lists and repeating others tweets en mass so we have been forced to change the way we can use it for protesting.

Some of our supporters from Bromley DPAC went to Calais in March where they were confronted by the harrowing living conditions for refugees

We once again took part in the Lush Summit in London where Paula did a workshop on Universal Credit and  Mary Ellen had her fantastic new art piece ‘UC – A Grave Condition’

We’ve produced several important papers last year as well as helping collect evidence for several consultation responses put together by Inclusion London.

Papers include – an alternative solution to the UK independent living crisis? Independent Living Support for the Future.

UBI: Solution or illusion? The implications of Universal Basic Income for disabled people in Britain. Our hard copy pamphlet on UBI will shortly be available to purchase at cost price of £1 although the report remains available on the website.

And as well as providing supporting evidence for UK consultations Ellen collated Consultation responses: – Latest report to UN Disability Committee launched in Parliament on 25 October (submitted by UK DDPOs) which included evidence of continuing attrocities disabled people had experienced and which we had collated for this report. The UK is not only the first country to be investigated by the UN Disability Committee it is also the only country to be annually monitored. If only the Tories felt any shame…..

And Submission to UN Extreme Poverty rapporteur (submitted from ROFA).

Paula was able to go to give evidence when the UN rapporteur met in East London and people from some of our local groups were able to attend local meetings with him especially Martin in Clacton.

In July the Department for International Development headed by ex- Minister for Disabled People, Penny Morduant, tried to pretend that the UK government cares about disabled people’s human rights and to pretend through hosting a Global Summit that they were good at this.

Naturally we felt the need to host our own events and held a Festival of Resistance to highlight the opposite truth and show those from foreign NGOs who attended what the abysmal reality is. It says much about the DfiD and their support for human rights that their co-hosts of this event were Kenya whose record on LGBT rights is so appalling.



Amongst our guests were Rose Achayo, Feliza ali Ramos and Alex Marcelo Vazqiez Bracamonte from Bolivia, Antonios Rellas from Greece, John Clarke from OCAP and of course John McDonnell and we were joined by Skype by Naiaty Yaacob from Malaysia.



It is also worth remembering the disgraceful way in which Disability Rights UK (DRUK) betrayed the disabled people’s movement toadying up to government at this sham summit.


While work for this summit was the main piece of activism last year DPAC’s work to fight for disabled people’s human rights goes on daily both nationally and amongst our many active local groups.

We were delighted that also in July at Unite’s policy conference one of our supporters, Ellen Morrison, gave a rousing and compelling speech in her capacity as a Unite delegateto ask conference to support Stop and Scrap Universal Credit which was carried. We continue our work to get this position formally adopted by Labour instead of the whimpish Pause and Fix stance the party currently continues to hold.


Ellen’s superb and emotive speech can be viewed here.



We’ve worked with Potent Whisper several times to support his rhyming guide to austerity and later last year on some video work with him that Paul and Keith helped with.

Conference season again saw us busy with meetings and speaking at events at the Labour Party Conference and lobbying Margaret Greenwood, who seems to be largely silent on the hostile environment disabled people face which is unacceptable and must change, followed by our bi-annual trip to the Tory Party Conference in Birmingham.

People from many of our local groups from around the country joined us there and it was particularly good to meet up with them all.




DPAC Protesters blocking Birmingham's tram routes

DPAC Protesters blocking Birmingham’s tram routes





We were also able to part sponsor an important disability art exhibition ‘I Protest’ in Norwich something a little out of the ordinary for us but which was a successful event and another way in which to spread information to the public.

I Protest art show https://www.facebook.com/IProtestNorwich/?modal=admin_todo_tour


Also last year we undertook a major piece of research into the postcode lottery of social care and charging funded by a grant from Network for Social Change and we have asked Barbara Keeley the Labour Party shadow minister for mental health and social care to provide a room in parliament for the launch of both this research and our work on the future of social care. So far she has not responded however we hope to have a reply shortly.

We’re still collating information on a few things mainly tell your story and on care charging and it would be helpful if anyone who hasn’t could fill in details on the website forms. This information is used for research, evidence, and media information so is vital to us all.








 Posted by at 21:19
Jan 242019

The Office for Disability Issues is seeking people to join the new Regional Stakeholder Network. We are looking for Chairs and Members for 9 regional groups across England. Applications should be completed by 29th March 2019.  There is no renumeration for either chairs or members and only occaissonal travel costs to London available.      

The Regional Stakeholder Network will bring the views of disabled people, local disability organisations, and organisations that represent disabled people closer to government. It will create face to face forums and provide a channel for people to share their views about policies and services that affect them. 

We are seeking people that want to make a difference, either as a Chair to lead and drive the efforts of their group forward, or a Member to share their views and experiences to help government make improvements.   

Go to our website for more details and to apply to join:


Kind regards



Office for Disability Issues I Department for Work and Pensions I Caxton House I Tothill Street I London I SW1H 9NA I odi.contactus@dwp.gsi.gov.uk

 Posted by at 15:53
Jan 242019

See below a letter from a coalition of Disabled People’s Organisations (DPOs), of which DPAC is a part, to the Cabinet Office, regarding a workshop, run by the Cabinet Office, about disabled people’s issues, that DPOs were excluded from.

For background to this letter see: Shock and anger at government’s failure to invite DPOs to disability workshop  (Courtesy of Disability News Service)

From UK CRPD Monitoring Coalition of Disabled Peoples Organisations

c/o Tracey Lazard,

CEO Inclusion London

336 Brixton Road

London SW9 7AA

Email to: Tracey.Lazard@inclusionlondon.org.uk

To: Tessa Dowdell

Open Innovation Team, Cabinet Office

M: 07989 573898

E: tessa.dowdell@cabinetoffice.gov.uk

23 January 2019


Dear Tessa,

Re: Addressing the barriers faced by disabled people Cabinet Office Workshop 18 January 2019, 1.00-3.00pm Cabinet Office, 70 Whitehall

We are writing in our capacity as the UK CRPD Monitoring Coalition of Disabled Peoples Organisations to express our deep dismay and concern about the total lack of engagement of Disabled Peoples Organisations (DPOs) from across the UK, that are run and controlled by Disabled people ourselves, in the above workshop held last week, that aimed to gain a better understanding of the barriers faced by Disabled people and to explore what more Government can do to tackle them.

When UK Coalition members contacted your office we were informed that the meeting was already at capacity, that it was ‘an initial exploratory meeting’ involving officials from Cabinet Office, the Office for Disability Issues and ‘a small group of academics and disability charity representatives’ and that if the work ‘develops into a more significant work stream’, then there will be the intention to ‘engage with a wide range of disabled person led and smaller groups’.

As already expressed by Coalition members this response is simply not acceptable. Aside from the irony of excluding Disabled people and our organisations from a discussion on the barriers faced by Disabled people, this action and approach goes against the spirit and letter of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). It not only fails to meet UK Governments obligations under Article’s 4 and 33 of the CRPD but it also ignores the serious concerns the UN Disability Committee expressed about lack of engagement in its Concluding Observations in August 2017 as detailed below and the subsequent General comment No. 7 (CRPD/C/GC7 2018) that set out in detail expectations for state engagement with DPOs:

1. The Committee is concerned about:

(a) The challenges facing organisations of persons with disabilities, including organisations representing women, children and intersex persons with disabilities, to access support and be consulted and actively involved in the implementation of the Convention; and

(b) The lack of mechanisms to ensure effective participation of all organisations of persons with disabilities, in decision-making processes concerning policies and legislation in all areas of the Convention, such as the strategy “Fulfilling Potential: Making it Happen”.

2. The Committee recommends that the State party:

(a) Allocate financial resources to support organisations representing persons with disabilities, including women and children with disabilities, and develop mechanisms to ensure an inclusive, strategic, and active involvement of organisations of persons with disabilities, including women, children and intersex persons in the planning and implementing of all legislation and measures affecting the lives of persons with disabilities; and

(b) Establish mechanisms supporting the full participation of organisations of persons with disabilities in the design and implementation of strategic policies aimed at implementing the Convention across the State party, through objective measurable, financed and monitored strategic plan of actions.

We understand that some DPOS are now meeting with Cabinet office representatives and though this is welcome this is simply not good enough. DPOs should not be an afterthought but should be automatically considered in the first instance as the primary stakeholder, including in the conception stages of such meetings. Our exclusion from this workshop would simply be unacceptable if it occurred under any other equalities strand, for example, a workshop on women’s issues held by men that excluded women’s organisations yet this is precisely what has happened here.

The UK CRPD Monitoring Coalition of Disabled Peoples Organisations is meeting with the Minister of Disabled People on the 14 February where we will be discussing the urgent need for a UK wide plan and framework for strategic engagement between DPOs and the Government. We hope and expect that the Cabinet Office and ODI will positively contribute to these discussions and pro-actively work to develop a strategic programme of engagement with DPOs that respects and reflects the CRPD and the principle of ‘nothing about us without us’

We look forward to hearing from you.

Yours sincerely

Damian Barry: Executive Director British Deaf Association

Linda Burnip: Reclaiming Our Futures Alliance /Disabled People Against Cuts

Julie Jaye Charles: CEO Equalities National Council

Rhian Davies: CEO Disability Wales

Tara Flood: Reclaiming Our Futures Alliance / Director Allfie

Dorothy Gould: National Survivors Users Network

Tracey Lazard: Reclaiming Our Futures Alliance / CEO Inclusion London

Andrew Lee: Reclaiming Our Futures Alliance / Director People First

Eleanor Lisney: Reclaiming Our Futures Alliance / Director Sisters of Frida

Karen Hall: Assistant Director Disability Action Northern Ireland

Kamran Mallick: CEO Disability Rights UK

John McArdle: Black Triangle

Denise McKenna: Mental Health Resistance Network

Dr Sally Witcher OBE: CEO Inclusion Scotland



 Posted by at 14:21
Jan 242019

DWP refuses to reveal police forces that share information on disabled protesters

The Department for Work and Pensions (DWP) is refusing to say which police forces have passed it video footage and other information about claimants of disability benefits who have taken part in anti-fracking and anti-austerity protests.

DWP’s attempt to hide its links with police forces has caused fresh anger among activists, who have this week called on disabled people to complain to their MPs, as well as police forces and DWP itself.

They have also called for disabled people to support those activists affected by such police actions.

There was widespread anger last month when Disability News Service (DNS) revealed that Lancashire police had admitted passing information to DWP about disabled people taking part in peaceful anti-fracking protests near Blackpool, in an apparent bid to have their disability benefits removed.

That came after DNS reported evidence that police forces, including Lancashire, were repeatedly targeting and assaulting disabled people involved in anti-fracking protests.

Lancashire police confirmed last month that it had passed on information and footage of disabled protesters at the Preston New Road site to DWP, although DWP itself would only say that it had no “formal arrangement” with any police force to pass on such information.

After Lancashire police’s admission, DNS submitted a freedom of information (FOI) request asking DWP which other police forces had provided similar information, and how many disability benefit claimants had been reported to DWP because of their participation in protests.

But DWP has now refused to answer those questions, or even to say whether it holds any such information in its records, claiming an exemption under section 30 of the Freedom of Information Act.

It is replying on an exemption which gives public bodies certain rights to refuse to release information that might be used in future criminal or civil proceedings.

But the Information Commissioner’s Office (ICO) has made it clear that in such cases public bodies must release the information if it is in the public interest, stating: “Where there would be no harm in releasing the information, or the public interest arguments in favour of disclosure outweigh those in favour of maintaining the exemption, it will need to be disclosed.”

DWP is also arguing that releasing the source of such information “may, in some cases, allow the identification of that source and could place individuals at risk”.

It appears to be arguing that telling DNS which police forces have passed it information about disabled protesters could risk the safety of individual police officers.

But Andy Greene, a member of the national steering group of Disabled People Against Cuts, said: “These are public bodies whose duty it is to look after our interests.

Instead, disabled people are being assaulted, denied their rights, having their incomes revoked and their independence taken away.

All because we dare to turn rhetoric – about parity of esteem, active citizenship and the right to choice and control over our own lives – into action.

Disabled people have every right to take action to defend our communities and the environment, we have every right to be heard, to demand equality and to stand beside our non disabled counterparts.”

He said they had the right to do this “without the threat of violence, without benefits being weaponised as a means of control and without vital support and equipment being taken away”, and “without our characters being called into question and insinuations being made about us”.

He urged disabled people to take action by supporting those disabled activists affected, by publicising what was happening, and by bringing the issue to the attention of their MPs and other elected representatives.

He also called on disabled people to complain to and about the DWP and the police, and “to organise themselves in their communities around these and other issues that are important to them”.

He added: “Things can be changed. But not by other people. It’s down to us.”

A DWP spokesperson refused to say whether Sarah Newton, the minister for disabled people, accepted that such exchange of information by public bodies risked adding to a hostile environment for disabled people who receive benefits, and made it harder for them to feel able to engage in their local communities because they feared being spied on.

But the spokesperson said in a statement: “The press office is unable to comment on the handling of FOIs.

There is no formal arrangement in place between DWP and any police force for this or other similar scenarios.”

DNS has now asked DWP’s freedom of information team to reconsider its decision. If it confirms its original decision, DNS is likely to complain to the ICO.

Meanwhile, Lancashire police has breached its duties under the act by failing to respond to a similar DNS request within 20 working days.

Asked why it had failed to respond within the legal timescale, a Lancashire police spokesperson said: “We apologise for the delay with our response. 

We would like to take this opportunity to thank you for your interest in Lancashire Constabulary and we will respond as soon as we are able.”

24 January 2019



Lobby aims to persuade MPs that DWP must First Do No Harm on assessments

Disabled activists are hoping to use a parliamentary meeting next month to persuade more MPs that action must be taken to prevent further deaths caused by the government’s much-criticised fitness for work test.

The First Do No Harm lobby on 13 February aims to expose the continued harm caused to disabled people by government social security reforms.

And it will focus on the repeated failure of the Department for Work and Pensions (DWP) to ensure that the “further medical evidence” needed to demonstrate a disabled person’s eligibility for out-of-work disability benefits is always collected, particularly for claimants with mental health conditions.

Although the lobby has been organised by Labour’s Treasury and work and pensions teams, through shadow chancellor John McDonnell and shadow work and pensions secretary Margaret Greenwood, activists hope that MPs from all parties will attend.

McDonnell told Disability News Service: “Disabled people have had enough of the continuing austerity, attacks and discrimination.

The lobby will brief on the plight of disabled people and lobby for reform to protect against this harm.”

The lobby is the result of campaigning by the disabled people’s grassroots group Black Triangle and other disabled activists.

The aim is to push for the principle of “First Do No Harm” to be included in the benefits assessment process, through a framework that “treats disabled people with dignity and respect”.

John McArdle, co-founder of Black Triangle, said assessors working for government contractor Maximus are asking for further medical evidence “in far too few cases”.

He said: “Time and time again, decisions on fitness for work are made without adequate medical evidence. That needs to be addressed by DWP ministers.

We know that DWP get it wrong in a very substantial number of cases. That means a great many people who are entitled to support are being denied it.”

Black Triangle wants new “safety protocols” introduced to ensure that the health and lives of disabled people are not put at risk by unfair decisions on eligibility following a work capability assessment (WCA).

McArdle said: “Black Triangle sees this above all as a human rights and public health issue that transcends any form of party politics.

Members of parliament from all parties will by now be keenly aware of the issues from meetings with their constituents in every constituency of the UK.

They will no doubt be as anxious as we are to achieve consensus on a way forward to ensure that sick and disabled people’s lives are protected from any further avoidable harm.

We would like to warmly welcome them to our lobby and to receive their feedback and input.”

The lobby follows years of mounting concerns about the WCA and the failure of DWP ministers to make the necessary changes to make the test safe.

Evidence of such failure dates to 2010, when incoming ministers in the new Tory-led coalition government were presented with a coroner’s letter calling for action to be taken to prevent future deaths.

Following an inquest into the death of Stephen Carré in January 2010, coroner Tom Osborne had written to DWP to express concerns that the system did not automatically seek further medical evidence from a claimant’s GP or psychiatrist if they had a mental health condition.

Four years later, another letter was sent to DWP by a coroner, raising the same concerns and making almost identical recommendations, this time following the death of a north London man.

The deaths of other claimants have also been closely linked to the failure to ensure that further medical evidence was obtained, including those of Mark WoodPaul DonnachieDavid Barr, and a Scottish woman known only as Ms D E.

Public health experts from the Universities of Liverpool and Oxford have also shown in a study that, across England as a whole, the process of reassessing people on incapacity benefit for the new employment and support allowance from 2010 to 2013 was “associated with” an extra 590 suicides, 279,000 additional cases of self-reported mental health problems, and the prescribing of a further 725,000 anti-depressants.

Next month’s lobby also aims to push the government to bow to years of pressure to carry out a cumulative assessment of the impact of its social security cuts and reforms on disabled people.

And it will call for an end to the government’s sanctions and conditionality regime.

Activists are now calling on disabled people and their allies to ask their MPs to attend the lobby, which is the first concrete result of meetings between disabled activists and allies and Labour shadow ministers, including McDonnell, Greenwood and shadow minister for disabled people Marsha de Cordova.

Both Greenwood and de Cordova are set to speak at a briefing as part of the lobby on 13 February.

Disabled people or allies who want their MP to attend the lobby should write to their MP – for example, by using the website WriteToThem – to inform them they wish to seek an appointment on the day of the lobby.

The lobby is due to take place on Wednesday 13 February between 1pm and 6pm, with the briefing from 2-3.30pm, in the Palace of Westminster’s committee room 15. The committee room can be used for one-to-one meetings with MPs or further discussions on the issue from 1pm-2pm and then from 3.30pm-6pm 

24 January 2019



Rudd accused of misleading MPs on universal credit by exaggerating jobcentre visits

The new work and pensions secretary has been accused of misleading MPs about her government’s under-fire universal credit benefit system, after she was caught exaggerating the number of jobcentres she had visited since her appointment.

Amber Rudd told the House of Commons earlier this month that she had visited “many” jobcentres since being appointed to replace Esther McVey as work and pensions secretary in November.

She used this reference to her frequent visits to justify her claim that jobcentre staff were “enthusiastic about universal credit”.

But following a freedom of information request from Disability News Service (DNS), her department has now admitted that at the time of making that comment she had visited just four jobcentres in two months, and two of those were in London.

The Department for Work and Pensions (DWP) said Rudd had visited London Bridge jobcentre on 22 November and North Kensington jobcentre on 27 November.

She then waited more than five weeks before visiting another two Midlands jobcentres on the same day, 4 January: in Yardley, Birmingham, and Longton, in Stoke-on-Trent.

But Rudd also appears to have misled MPs earlier in the same Commons session, as she attempted to fend off an attack on universal credit by the Labour/Co-op MP Luke Pollard.

Pollard had told her of a disabled constituent who had received a universal credit payment of just 1p, leaving him 77p to live on over Christmas, and he told Rudd that the system was causing “misery and poverty for far too many people”.

But Rudd told Pollard of the efforts being made by work coaches and how she had “visited a number of jobcentres last Friday”.

DWP’s freedom of information (FOI) admission shows Rudd visited just two jobcentres on that day.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “It seems we have yet another DWP minister who lives in a mythical fairytale world and who is also an outright liar.

It is very sad that the quality of government ministers remains so substandard.”

A DWP spokesperson refused to say how Rudd justified using the word “many” and whether she would now apologise to MPs for misleading them.

Instead, he said in a statement: “This FOI response only shows jobcentres that [the] secretary of state has visited since becoming a minister and doesn’t take into account visits she has made to jobcentres during her eight years as an MP.”

Only last month, MPs on the work and pensions select committee warned that the move to universal credit could have “disastrous” consequences for disabled people if ministers failed to make a series of major changes.

They warned that the introduction of the new system risked forcing disabled people “further into poverty, deprivation, miserable hardship”.

Disabled activists have repeatedly warned that universal credit – which combines six income-related benefits into one – is “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.

24 January 2019



Care watchdog criticised over abandoned bid to replace service-user contracts

The care watchdog is facing heavy criticism after being forced to abandon a year-long attempt to find organisations to run a programme that sends expert service-users to assist on inspections of care homes, hospitals and care agencies across England.

The Experts by Experience (ExE) programme is currently run by two contractors, Choice Support and Remploy, but disabled people and other service-users who take part in the scheme have been pushing the Care Quality Commission (CQC) for years to dump Remploy because of its poor performance.

A process to find new contractors began in August 2017, with an invitation to tender released in August 2018, but CQC decided to terminate the process last November.

The existing contracts with Remploy and Choice Support were supposed to expire this June but have now had to be extended by nine months until 2020 after CQC failed to find more than two possible contractors willing to enter detailed negotiations.

Disability News Service (DNS) has been reporting on concerns about Remploy’s performance since it began work on the contracts in early 2016, with initial reports of confusion, cutbacks and a stream of resignations, and some Remploy ExEs being told to print their own ID badges.

It then emerged that Remploy had lied about the involvement of user-led organisations in its new contracts.

There were also concerns about the decision to award the contracts to an organisation mostly owned by the US company Maximus, which already had a huge chunk of Department for Work and Pensions contracts and had a lengthy record of discrimination, incompetence and alleged fraud in the US.

A group of 30 current and former ExEs have now reacted to the collapse of the tendering process by sending the commission a letter, accusing it of wasting “huge amounts of time and public funding” on a “lengthy and now abandoned procurement exercise”.

They say the last three years have been “a shambles”, and add: “The aim of the 2016 contract was to increase the number of skilled and trained Experts and ensure the experiences of people who use health and social care services were a vital and increasing part of the inspection process and rating system. That did not happen.”

The letter says the service provided by Remploy, after nearly three years of running three of the four regional ExE contracts, “continues to be poor, ineffective, chaotic, unfair, reactive and damaging to Experts, but more importantly, a disservice to people who use health and social care services”.

They say this “continues to bring the Experts by Experience programme and the whole of CQC into disrepute”, and they accuse Remploy of failing to check the references of potential ExEs, providing poor induction and training, failing to offer feedback to ExEs, and asking them to travel more than 50 miles to inspections.

These flaws are causing skilled and trained ExEs to leave the programme, they say.

They accuse CQC of failing to learn the lessons of the previous procurement exercise in 2015, which has permitted “poor performance and practice from Remploy to continue with no redress” and has allowed Remploy to continue paying ExEs £9 an hour when Choice Support pays its own ExEs £15 an hour.

Their letter also points out that CQC was forced to re-negotiate the Remploy and Choice Support contracts in 2017 after it failed to request enough ExEs to take part in inspections.

One ExE told DNS: “A lot of us have been waiting since 2016 for CQC to get rid of Remploy.

We were expecting the new contract to start in June this year.

Now they say they have asked the current providers to continue until 2020. That was such a blow.

It felt like the rug being pulled from under your feet. It will be four years with a provider [Remploy] that is just dreadful.

This is a massive waste of public money. How much must this procurement have cost over such a lengthy time? They must have had huge legal costs.

We are stuck in limbo now. We just feel let down and abandoned.”

Chris Day, CQC’s director of engagement, said in a statement: “Unfortunately we did not reach the minimum number of required tenders to be able to proceed to the next phase of the CQC Experts by Experience procurement and had no other option but to terminate the process.

While we understand the frustration and uncertainty faced by some around this decision it is essential that we get this right and will restart this procurement as soon as possible.

The current contracts with Choice Support and Remploy Ltd will be extended until March 2020 to make sure there is no interruption to the programme.

We remain absolutely committed to the Experts by Experience programme and we are grateful for the continued hard work and support from Experts by Experience, Choice Support, Remploy Ltd and their partners in helping us to ensure we continue to embed the voice of people who use services throughout our work.”

In a letter responding to the 30 ExEs, CQC’s chief executive, Ian Trenholm, said that more than 90 per cent of Experts who sent feedback forms to CQC in November and December rated both Remploy and Choice Support as either good or excellent.

A Remploy spokesperson said in a statement: “Experts by Experience is an important programme that ensures the voice of health and care service users and their families are heard during inspections.

Remploy is proud to be delivering the programme to a high standard, consistently meeting or exceeding all contractual commitments over the past year.

As an organisation we are committed to supporting all of our Experts by Experience (ExEs) to carry out their important work. 

We regularly engage with ExEs to seek their feedback on the delivery of the programme.

Feedback from more than 1,500 inspections shows that 92 per cent rated the support they received from Remploy as good or outstanding. 

We look forward to working closely with ExEs and the CQC as we continue delivery of the current contract until March 2020.”

Choice Support declined to comment.

24 January 2019



MPs’ online abuse report: Disabled people ‘exposed to horrendous abuse’

An inquiry by a committee of MPs has revealed the “horrendous, degrading and dehumanising” abuse that disabled people are exposed to when they use the internet.

The inquiry heard from disabled people who face abuse not just on social media but also through online games, web forums, and comments on news stories on media websites.

The House of Commons petitions committee has now published its final report on this abuse, and has concluded that self-regulation of social media has failed disabled people.

The inquiry was launched in response to a petition set up by former model Katie Price, which was signed by more than 220,000 people and followed years of disablist and racist abuse targeted at her teenage son, Harvey.

The committee was repeatedly told during its inquiry of the widespread use of offensive slurs such as “retard”, “mong” and “spastic”.

It heard of the frequent use of photographs of disabled people with visible impairments, particularly disabled children, to create internet memes (images or videos created to be shared widely online, particularly via social media).

Disabled people who use the internet said they were told that they should not have been born, were asked if they thought they should have been aborted, and were told they would be better off dead.

The disabled writer and performer Penny Pepper told the committee: “I’ve been called an ‘it’ many times – ‘What is IT doing?’… I’ve had remarks about how I look in my wheelchair, and a few times the statements, ‘You should have been aborted’, and, ‘You don’t deserve to live’.”

Many disabled people have been accused of benefit fraud and threatened with being reported to the Department for Work and Pensions after posting images online of themselves outside their homes or while involved in political activism, the committee heard.

Some had even been targeted by strangers attempting to obtain their confidential medical information in order to try to prove that they are guilty of benefit fraud.

If they have refused to provide this evidence, it is taken as proof of fraud and they are seen as “deserving of abuse and harassment”.

Inclusion London, which gave evidence in person to the inquiry through its chair Anne Novis, also provided the committee with multiple links to Facebook pages that had been set up to try to expose disabled people as benefit frauds.

Some disabled people were asked for explicit photographs, the committee heard, “with the implication that disabled women, in particular, should be grateful for the attention” and could therefore be abused if they refused to provide such images.

The committee also heard from people with learning difficulties who had been targeted for the purposes of sexual or financial exploitation on social media and online dating sites.

The committee produced a series of draft recommendations last year, and then carried out a lengthy public consultation, the first select committee to do this, with events in England, Wales, Scotland and Northern Ireland.

Many of those who took part in the consultation spoke of a culture of “demonising” disabled people, while the “hostile language” linked to benefits and the use of blue parking badges was mentioned at all these events.

Inclusion London told the committee in written evidence: “Disabled people have reported increasing levels of both online and offline abuse since 2010 targeted around an idea of disabled people as ‘benefit scroungers’ and ‘fraudsters’.

This is a direct result of public attitudes being affected by statements made by politicians about fraud in the disability benefits system relentlessly amplified in the media.”

The report says the committee heard from many disabled people who had repeatedly abandoned their online profiles because of the abuse they had experienced.

One disabled participant at the committee’s Newcastle consultation event said she was currently on her 17th Facebook account.

The report says: “For many, repeatedly having to change contact details leads to damaged career prospects, depleted social support and greater social isolation.

We heard from others, in person and online, who felt that it was too risky to reveal that they were disabled due to worries about their employment prospects and the abuse they might attract.”

The report also warns that online abuse can be “a life or death issue” for some disabled people.

It says: “Its effects are felt not only in damaged physical and mental health, but in lost career opportunities and a restricted social life.”

The report includes a list of recommendations for government and social media giants such as Twitter, Facebook and Google (see separate story).

Helen Jones, the Labour MP who chairs the committee, said: “Our inquiry into online abuse and the experience of disabled people has shown that social media is rife with horrendous, degrading and dehumanising comments about people with disabilities.

The law on online abuse is not fit for purpose and it is truly shameful that disabled people have been forced off social media while their abusers face no consequences.

There is no excuse for the continued failure to make online platforms as safe for disabled people.

Self-regulation has failed disabled people and the law must change to ensure more lives are not destroyed.”

A government spokesperson said: “As part of the Online Harms White Paper we are bringing in new laws and reviewing existing ones to make the internet safer for everyone, including disabled people.”

The white paper is due to be published early this year.

The government also announced last October that the Law Commission has been asked to review current hate crime legislation – as the commission recommended four years ago in a heavily-criticised report – following concerns that it does not offer disabled and LGBT people equal protection to that given to other protected groups.

The review is likely to include examining the possible extension of aggravated offences – which have higher sentences but currently can only apply to crimes linked to race and religion – to disability, sexual orientation and transgender identity.

24 January 2019



MPs’ online abuse report: ‘Government ignored disabled people in safety probe’

A government examination of online safety almost entirely ignored the needs of disabled people, despite them facing “horrendous, degrading and dehumanising” abuse when they try to use the internet, a committee of MPs said this week.

The Commons petitions committee said this week that it was difficult to see how the government could tackle this abuse – which it said was even a “life and death issue” for some users – if it failed to consider or consult disabled people.

It called on the government to admit that the current model of self-regulation of social media had failed disabled people and to take steps to ensure that social media companies “accept their responsibility for allowing illegal and abusive content on their sites and the toxic environment this creates for users”.

The committee’s inquiry into the online abuse of disabled people has heard from those who have been exposed to abuse not just on social media but also through online games, web forums, and comments on news stories on media websites.

The inquiry was launched in response to a petition set up by former model Katie Price, which was signed by more than 220,000 people and followed years of disablist and racist abuse targeted at her teenage son, Harvey.

The committee said in the inquiry’s final report this week that it had heard from digital and creative industries minister Margot James about the government’s failure to include disabled people in its consultation on the internet safety strategy green paper, which closed at the end of 2017.

She told the committee that the government had provided “a link to request an accessible format” of the green paper and that it had held roundtables with “teachers representing mainstream and specialist provision schools”.

But the committee’s report says: “Neither of these represent consultation with disabled people – most disabled people in the UK are not school children who need teachers to speak for them.”

The committee said that both the minister and social media companies had responded to questions about disabled adults with answers about children.

It concludes in the report: “We heard that failing to consider or consult disabled people was sadly the norm rather than the exception.

If the Government does not adequately consider or consult disabled people in developing its Internet Safety Strategy, it is difficult to see how it can tackle the online abuse of disabled people.”

Among the committee’s recommendations is a call for the government to “acknowledge the importance of the internet to disabled people and how disabled people are affected by abuse” and to commit to ensuring that “the internet is no more dangerous for disabled people than non-disabled people”.

It makes it clear that there is a need for new laws that criminalise online abuse, and it says the government must consult disabled people “directly” on this.

The report also calls on the government to increase the representation of disabled people in its own events, publications and advertising

And it says ministers should force social media companies to ensure that all their policies, mechanisms and settings are accessible to all disabled people, which should include the provision of “easy read” versions of all relevant policies.

The committee says that social media companies should be more proactive in searching for abusive and extreme content, reporting potentially criminal behaviour, and ensuring their users “understand the limits of acceptable behaviour”.

The committee also says that hate crime legislation must provide disabled people with the same protection as it gives those who experience hate crimes due to their race or religion.

The report says: “The lack of parity between disability hate crime and offences towards people on grounds of race and religion was brought up time and again by the disabled people we spoke to.

They felt very strongly that the criminal justice system did not take crimes against disabled people seriously.”

Among its other recommendations, the committee’s report calls on the government to abolish the need to prove that a hate crime against a disabled person is motivated by hostility, adding: “It should be enough to prove that an offence was committed ‘by reason of’ their disability.”

It also recommends that the government finds a way to ensure that employers of support workers or other people working with or for disabled people can check whether a potential employee has been convicted of a disability hate crime.

And it says ministers should launch an immediate review to address the issue – particularly affecting people with learning difficulties – of criminals “befriending” disabled people with the aim of exploiting them financially or sexually, both online and offline.

But the committee says that any change in the law that results from such a review must be co-produced with disabled people to ensure that “their capacity to make their own decisions is respected and that they are not further marginalised”.

The committee says in the report that too many disabled people had told the inquiry that their experiences with the criminal justice system had been “largely or wholly negative” and that there was a lack of national co-ordination and long-term funding in tackling disability hate crime.

A spokesperson for the Department for Digital, Culture, Media and Sport (DCMS) said: “The Digital Charter set out our ambition for everyone to safely access the opportunities of the internet.

In our [online harms] white paper we will set out plans to tackle the full range of harmful online content, and have engaged with disability groups to shape our thinking on proposals for new laws to make the UK the safest place to be online.”

The white paper is due to be published early this year.

A DCMS spokesperson said the department would consult further with disability groups as part of the white paper consultation, and that the government knew there was more to be done to make sure it was engaging and involving disabled people in policy-making.

He also said DCMS had been working on the white paper with organisations including Disability Rights UK, Changing Faces and AbilityNet, and was looking at how it could improve its engagement and consultation with people with learning difficulties.

The government announced last October that the Law Commission had been asked to review current hate crime legislation – as the commission recommended four years ago in a heavily-criticised report – following concerns that it does not offer disabled and LGBT people equal protection to that given to other protected groups.

The review is likely to include examining the possible extension of aggravated offences – which have higher sentences and currently can only apply to crimes linked to race and religion – to disability, sexual orientation and transgender identity.

24 January 2019



MPs’ online abuse report: Concern over links between abuse and football fans

MPs have raised serious concerns about links between football fans and the targeted online abuse of disabled people.

The House of Commons petitions committee said in a report this week that it had become “increasingly concerned” about such links during its inquiry into the “extreme level of abuse” faced by disabled people who use the internet.

The committee found widespread use of “ableist slurs” and terms connected to disability being used as insults by football supporters.

It even found some fans using the name of Harvey Price, the disabled son of former model Katie Price, as a way of insulting a footballer’s ability.

The inquiry was launched in response to a petition set up by Price, which was signed by more than 220,000 people and followed years of disablist and racist abuse targeted at Harvey, himself a football fan and the son of former Manchester United striker Dwight Yorke.

The committee contacted five organisations about its concerns: the Premier League, the English Football League, the Football Association, the Professional Footballers’ Association (PFA), and Kick It Out, which campaigns for equality in football.

Only one of the five, the PFA, responded to the committee’s concerns, but the other four have now apologised for an administrative error that led to them failing to send the committee their joint response.

That formal response has now been sent to the committee, along with an apology.

A Kick It Out spokesperson said: “Kick It Out drafted a response in the days following the letter from the petitions committee.

However, following discussions with our funders it was decided a joint response from Kick It Out and all the governing bodies would be issued.

Unfortunately, this did not materialise before the committee’s deadline and we apologise unreservedly for the oversight on our part which led to this.

This period coincided with a serious illness to our chief executive, which caused major disruption in our work.

Since 2012, Kick It Out has been raising awareness about online discrimination, including abuse towards disabled people, and continues to support victims of such abuse.

This has been achieved through our work as a reporting bureau, as well as expert working groups, online research and campaigns such as ‘Klick It Out’.

Kick It Out is not a sanctioning body. Therefore, we are not able to unilaterally ‘act’ to end a problem ourselves.

However, the organisation continues to work closely with various regional police forces, the British Transport Police, the UK Football Policing Unit, the football authorities and social media platforms to report any discrimination and achieve justice for victims of such abuse.

Politicians must also step up their own efforts to tackle the problem which is prevalent across society, not just football.”

The Premier League said that the organisation and its member clubs “do a huge amount of work to encourage inclusion and equality throughout football, and to challenge discrimination in the game”.

It has worked with Kick It Out to fund and develop an app that “enables discreet reporting of any discrimination in the sport, whether in a stadium, on social media, at grassroots level or elsewhere”.

A Premier League spokesperson said: “Our own social media accounts are monitored for offensive and discriminatory language, which is removed whenever possible.

We recently co-hosted a round table event with Stonewall to consider football’s approach to online hate speech, and we have held collective discussions within football about the Football Offences Act and whether its terms could be extended to include all protected characteristics.”

24 January 2019



Universal credit protest as high court hears ‘discrimination’ case

Disabled activists have protested outside the Royal Courts of Justice to draw attention to the continuing harm caused by universal credit, as the high court hears a legal challenge that aims to brand the government’s policy “irrational” and “discriminatory”.

Members of grassroots groups WinVisible, the Mental Health Resistance Network and Disabled People Against Cuts spoke of the harm caused to disabled people by universal credit.

Inside, barristers representing the Child Poverty Action Group (CPAG) in the judicial review were describing the severe financial impact of universal credit on a disabled woman and on a woman and her disabled daughter.

Only last week, Disability News Service reported how a disabled benefit claimant with high support needs who had lost more than £40 a week after having to transfer onto universal credit – forcing him into even greater poverty – had challenged the government to defend its reforms.

Outside the high court this week, one of the disabled campaigners, Paula Peters, said she was there to highlight the “horrendous discrimination around universal credit” which was seeing disabled people losing the support they need to live and to meet their care and access needs.

She said: “Our message to the government and to Labour as well is that we need to stop this from happening and we need to scrap this system and come together to design a social security system that supports people from cradle to grave and supports people to be fully included in society.

It’s marginalising disabled people, excluding them, ramping up distress, and [as a result] disabled people are harming themselves.”

Another disabled protester, Claire Glasman, from WinVisible – which supports disabled women – said the government had known the “cruelty” of the impact universal credit would have before it began rolling it out across the country.

The move to universal credit was causing a “massive financial loss” to disabled children, carer mums and single disabled women, she said, all groups who “suffer the most from the tax and benefit cuts”.

She said she could not understand the mentality of government ministers who had introduced and were defending the changes.

She said: “They are treating those of us at the bottom as useless eaters. They have no interest in preserving our life. But we do.”

Glasman said there was now “massive opposition to UC” and the new work and pensions secretary Amber Rudd had already been forced to make some concessions.

She said: “I think the pressure is getting through.”

The first judicial review case being heard by the high court his week concerns a disabled woman who was forced to claim universal credit after DWP decided she was no longer eligible for personal independence payment and then stopped her employment and support allowance when she failed to attend a work capability assessment, despite her health deteriorating.

The move cost her more than £180 a month because the severe disability premium (SDP) that was part of the ESA system is not part of universal credit.

Although she later challenged the termination of both her PIP and her ESA, the law prevented her returning to ESA.

The second case concerns TD, a single mother with a disabled child, who gave up her job to become a full-time carer but had her income support terminated when her child’s disability living allowance (DLA) – and therefore also her carer’s allowance – was about to end and before it could be renewed.

She was also told by the jobcentre to claim universal credit, which she did.

The family is no longer financially worse off, because TD succeeded in having her daughter’s DLA award increased, which meant they received a more generous level of universal credit.

But despite DWP eventually admitting that there had been a mistake, for 18 months TD was receiving almost £140 a month less under universal credit than when she was receiving income support.

CPAG’s legal team is arguing that these policies are irrational, discriminatory and breach the Equality Act’s public sector equality duty.

Ministers have now introduced legislation preventing any further disabled people who receive SDP from moving on to universal credit ahead of the “managed migration” process, which – apart from a small pilot this summer – will not begin until next year.

No-one previously claiming SDP will receive a lower monthly payment when they move onto universal credit through managed migration, ministers have promised.

There will also eventually be compensation for those who have already moved onto universal credit and lost out because of SDP, but this will not fully compensate those with high support needs who are recognised as having limited capability for work-related activity.

This group are still set to be as much as £100 a month worse off under universal credit when the compensation is finally paid.

And there will be no compensation for the many thousands of new universal credit claimants who would have received higher payments under the previous system.

A DWP spokesperson said: “We are unable to comment on an ongoing legal case.

Universal credit is a force for good and over 1.6 million are receiving the benefit successfully.”

Meanwhile, the Commons work and pensions committee has launched a new inquiry into “natural migration”, the process by which claimants move onto universal credit from existing benefits if their circumstances change, as happened to the people involved in the judicial review cases.

24 January 2019



Two years on from Supreme Court bus ruling, protesters call for overdue action

Campaigners have protested outside the Department for Transport (DfT) to call for new laws that would protect the rights of wheelchair-users to use buses, on the second anniversary of a ground-breaking Supreme Court victory.

Two years ago (on 18 January), the Supreme Court ruled that First Bus had breached its duty to make reasonable adjustments for disabled people under the Equality Act through its “first come, first served” policy on the use of wheelchair spaces.

It was the first case of disability discrimination in service provision to be heard by the country’s highest court, and the victory followed a five-year legal battle by accessible transport activist Doug Paulley.

He had had been planning to travel to Leeds to visit his parents in February 2012, but he was prevented from entering a bus because the driver refused to insist that a mother with a sleeping child in a pushchair should move from the only wheelchair space.

The Supreme Court ruled unanimously in January 2017 that disabled passengers have a right to priority access over the wheelchair space on a bus, and that a driver must do more than simply ask a non-disabled passenger to move.

But two years on, many users of wheelchairs and mobility scooters say that too little has changed since the ruling, and that parents with buggies often refuse to move from the space.

Although some drivers pay attention to the Supreme Court ruling, many others ignore it.

Following the ruling, the government set up a group of advisers to produce recommendations for action, which were finally published last March and recommended new powers for drivers and fresh guidance.

DfT welcomed the recommendations “in principle” but announced a further consultation with “a view to bringing forward a package of measures” later in 2018.

It has so far failed to produce those measures.

Transport for All, which campaigns for accessible transport for older and disabled people in London, held a protest outside DfT on Friday, on the second anniversary of Paulley’s victory.

Nina Grant, a wheelchair-user from north London who took part in the protest, told Disability News Service (DNS) that the situation had improved “a little bit” since the Doug Paulley victory.

But she said there had not been “any real progress”.

She said: “Overall, things have not really changed. I take the bus maybe four to six times a week in a good week and I will have issues in maybe two of those.

Sometimes I manage to persuade the driver to help me. Sometimes I am allowed to plead my own case to the people with the buggy and sometimes I am told to get the next bus. But what happens when the next bus also has a buggy?”

She now takes out her phone when a bus approaches, so the driver is aware that she may be recording his actions.

She said: “I make it look like I am. If I see there is a buggy, I will take a photo of the bus number plate in case I have to make a complaint. They are more likely to comply [if I do that].

I have seen one or two drivers tell the person with the buggy that they need to move, but they seem to be the rare exception.

I shouldn’t have to have my phone out recording for them to do what is put down in the guide book for them.”

She added: “Every time I complain I am told, ‘That’s really bad, we will feed it back.’

I don’t know what is fed back but it doesn’t seem to have much of an effect.”

Jeff Harvey, another wheelchair-user who took part in the protest, told DNS that he was forced to rely on buses in London because there were so few accessible underground stations.

But he frequently experiences conflict over the wheelchair space, just as Paulley did.

He said: “Doug’s case should have had a big effect on that but unfortunately because of the lack of action by the DfT and parliament it has only had a small positive influence.

Every time I take a bus I get ready for a fight. My stress level goes up just waiting.”

Sometimes he will go a few weeks without an incident but then he will experience several in one day, he said.

He added: “It can be very frustrating. It can be very time-consuming, especially when I have to wait for another bus.”

Another wheelchair-user, John, said he experiences such problems less frequently than before the Paulley ruling “but it still happens”.

He said: “It is always stressful just waiting for a bus.”

A DfT spokesperson refused to say why it had not yet published its “package of measures” or if the department agreed that too little had changed since the Supreme Court ruling.

But she said in a statement: “We are clear that disabled people must have the same opportunities to travel as other members of society.

Wheelchair spaces on buses should already be available to those who need them, and this government will be announcing further plans to improve access in due course.”

24 January 2019



Disabled pupil fights at high court for full school inclusion

Inclusive education activists were at the high court in London this week to support a disabled pupil in her legal fight to secure full participation in all aspects of life at her mainstream school.

The Alliance for Inclusive Education (ALLFIE) is one of the organisations supporting Anna’s* mother in her claim that their local authority is failing to ensure that her daughter has the support she needs at school.

She approached ALLFIE last summer for support with their court case.

Anna’s school had been facing problems recruiting qualified teaching assistants with the necessary experience in using Braille.

As a result, Anna, who has a significant visual impairment, had not been able to take part in the curriculum on a par with her non-disabled classmates. 

Their local authority had given individual schools responsibility for recruiting and employing teaching assistants for their disabled pupils, but this meant there was no central pool of assistants available for disabled pupils.

Anna’s lawyers were set to argue this week that this meant that the local authority, which cannot be named, has been breaching the Equality Act’s public sector equality duty, the European Convention on Human Rights (ECHR) and the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

As the law stands, there is a general presumption that disabled pupils will be educated in a mainstream school, but there is no guidance on how local authorities should arrange special educational needs and disability (SEND) provision for disabled pupils who have education, health and care plans.

The case was mentioned in the House of Lords on Tuesday by the disabled Labour peer and former education secretary Lord [David] Blunkett, who said that disabled young people like Anna were “desperately struggling” because of a lack of support.

The junior education minister Lord Agnew told him that spending plans beyond 2019-20 would be set at the next spending review, and that the government was “committed to securing the right deal for education, including for those children and young people with special educational needs”.

ALLFIE says there is no requirement for local authorities to arrange their SEND provision in a way that maximises the participation of disabled pupils in all aspects of school life, or to maximise parental choice in finding a mainstream school for their disabled child.

It wants the high court to provide guidance on how local authorities can comply with their duties free from disability-related discrimination, under the Equality Act, the UNCRPD and the ECHR.

The UN’s committee on the rights of persons with disabilities was highly critical of the UK government’s record on inclusive education when it published its “concluding observations” on the progress the UK had made in implementing the UNCRPD in August 2017.

The committee was highly critical of the UK government’s approach, and the “persistence of a dual education system” that segregates increasing numbers of disabled children in special schools.

It called instead for a “coherent strategy” on “increasing and improving inclusive education”, which would include raising awareness of – and support for – inclusive education among parents of disabled children.

Simone Aspis, ALLFIE’s policy and campaigns coordinator, told Disability News Service outside the Royal Courts of Justice yesterday (Wednesday): “There are some local authorities and schools that do a very good job, and some will not.

What we are looking for here is guidance that makes it quite clear that whatever model is used by the local authority, it has to [maximise] disabled children’s rights to access the whole curriculum, and extra-curricular activities as well.”

She said earlier: “The problem about the presumption of mainstream education is that even though disabled pupils have the right to be included in mainstream school, there is nothing in law that guides local authorities and schools on arranging SEND provision that enables them to participate in mainstream education on a par with their non-disabled peers.

The legal challenge comes after the UNCRPD committee found that the UK has systematically violated disabled pupils’ human right to mainstream education, as set out in UNCRPD article 24.

The committee recognises the fundamental role of SEND provision in promoting disabled pupils’ human right to mainstream education without discrimination.”

She added: “This is a very important case because for too many disabled pupils, failure in mainstream schools arises when local authorities do not arrange SEND provision in a timely manner and in a way that guarantees high quality support to enable disabled pupils to follow the entire school curriculum at all times, ie without any gaps.

This leaves disabled pupils being treated in a discriminatory way, as they are denied full participation in the school curriculum and all aspects of school life because they are disabled and require assistance.

We therefore want the court to issue guidance and rule that leaving disabled pupils without appropriate assistance to engage in mainstream education is disability discrimination and a breach of disabled pupils’ human rights.”

*Not her real name

24 January 2019



BFI’s free film collection shows 100 years of disabled people on film

Leading disabled actors and directors and key figures in the disability movement are featured in a new collection of free online content that shows how disabled people have been represented on film in Britain over the last century.

The British Film Institute has released more than 170 documentaries, short films, charity appeals, home movies and news reports dating from 1911 to 2017.

The Disabled Britain on Film collection includes work featuring film-makers and actors such as Liz Crow, Mat Fraser, Jamie Beddard, William Mager and Charlie Swinbourne.

Among the films is Crow’s Resistance, a short drama from 2008, featuring Fraser and Beddard, about the Nazi’s Aktion T4 euthanasia programme.

The collection also features Heredity in Man, a chilling 1937 film which features Julian Huxley, brother of Brave New World author Aldous Huxley, extolling the principles of eugenics, and arguing that people with learning difficulties – or “defectives” as they were then often termed – were happier living in huge institutions.

He concludes that “it would have been better by far for them and the rest of the community if they had never been born”.

The Huxley film was produced as Hitler was using the same ideas to unleash Aktion T4, which would lead to the murder of hundreds of thousands of disabled people at the hands of Nazi doctors.

Also included in BFI’s free online collection is a 1983 documentary on Ian Dury, in which he talks about how becoming disabled affected his life and music and explains the thinking behind his disability rights punk anthem Spasticus Autisticus.

The collection also features a number of films released by disability charities in an attempt to raise funds from the public, featuring actors such as Sean Connery and Charles Laughton, but also documentaries which feature the voices of disabled people speaking for themselves.

These include Y Gwr O Gwr Aran (1978), a Welsh language portrait of a disabled husband, father and teacher; A Day in the Life of Kevin Donnellon (1972), which documents the life of an 11-year-old thalidomide survivor; and The Smallest Woman in the World (1972), a news report on Joyce Carpenter, from Bromsgrove, who at the time was thought to be the world’s shortest woman.

There is also a smaller collection of films to rent, including the 14-minute Disabled, made in 1967, which features a three-minute interview with a young Paul Hunt, outlining his vision for a society where disabled people have independence, choice and control.

The interview was carried out five years before Hunt – who would play a key role in the campaign against institutional discrimination – was to co-found the ground-breaking Union of the Physically Impaired Against Segregation (UPIAS).

At the time, Hunt was living in the Leonard Cheshire home Le Court, where he and other residents rebelled against the restrictive regime.

He speaks in the film of how he was only living in an institution because he had “no effective choice”, and compared the situation in the UK with that in Denmark, where a development of flats in Copenhagen allowed disabled people to live independently.

He says in the film: “Some sort of realistic financial help is a priority, and also the provision of more nursing help to people in their own homes.”

He adds: “In general, the attitude of the general public could do with a little changing.

One does meet a lot of misunderstanding, and prejudice, really, from people.”

24 January 2019

News provided by John Pring at www.disabilitynewsservice.com


 Posted by at 14:07
Jan 212019

 As well as our previous post about a vigil at 1.30 pm concerning two UC cases this weektThe Alliance For Inclusive Education supports a human rights legal challenge around the provision of support for Disabled pupils with visual impairments within mainstream schooling.

On the 23rd January in the High Court a severely visually impaired pupil will claim that the local authority is breaching her rights in the way it arranges specialist teaching assistant support in mainstream schools.

The local authority has decided to give individual schools the responsibility for the recruitment and employment of Teaching Assistants for their Disabled pupils. This means there is no central pool of specialist support staff (specialist teaching assistants) available when a Disabled child wants to join a particular school.

The court is being asked to make a decision on whether the local authority’s policy to delegate responsibility to schools for the recruitment and employment of TAs is lawful under the Equality Act 2010 Public Sector Equality Duty, European Convention on Human Rights and UN Convention on the Rights of Persons With Disabilities around promoting Disabled pupils’ right to participate in mainstream education free from disability discrimination.

Currently, there is a presumption of mainstream education for Disabled pupils under the Children and Families Act. However, there is no requirement in law that local authorities should arrange SEND provision that will maximise parental choice of mainstream schools or promote Disabled pupils’ full participation in the curriculum.

“This is a very important case because for too many Disabled pupils, failure in mainstream schools arises when local authorities do not arrange SEND provision in a timely manner and in a way that guarantees high quality support to enable Disabled pupils to follow the entire school curriculum at all times, ie without any gaps. This leaves Disabled pupils being treated in a discriminatory way, as they are denied full participation in the school curriculum and all aspects of school life because they are Disabled and require assistance. We therefore want the court to issue guidance and rule that leaving Disabled pupils without appropriate assistance to engage in mainstream education is disability discrimination and a breach of Disabled pupils’ human rights,” says the Alliance for Inclusive Education’s Policy and Campaigns Coordinator Simone Aspis.

Anthony Gold Solicitors are representing the client and Steve Broach of Monckton Chambers is instructed counsel.

For more information please contact Simone Aspis:

Phone: 0207 737 6030 / mobile: 07856 213 837

Email Simone.Aspis@allfie.org.uk


 Posted by at 14:47
Jan 182019


  • Hosted by WinVisible – women with visible & invisible disabilities, DPAC and MHRN
  • Wednesday January 23rd, 13.30-13.45pm at Royal Courts of Justice, Strand, WC2A 2LL

Supporting legal challenge against Universal Credit by the single mum of a disabled daughter, and a man who was on ESA. Mum and daughter are £140/month worse off under UC than Income Support. Man has lost severe disability premiums.
PHOTOCALL outside court at 1.30pm.
Go into court from 10/10.30 onwards. Court room list here, case of TD and AD https://www.justice.gov.uk/courts/court-lists/list-rcj
Case continues Thursday 24 January.

More info: https://www.disabilitynewsservice.com/dwp-facing-court-over-claimants-universal-credit-fit-for-work-injustice/


 Posted by at 15:51
Jan 182019

Haringey Against Universal Credit Public Meeting

by SSUCH – Stop & Scrap Universal Credit Haringey 

The Eventbrite page for the meeting is http://bit.ly/ucevent 

 Thursday 24th January 7.30
Alevi Centre
19 Clarendon Rd 
N8 0DD 


Catherine West, MP for Hornsey and Wood Green (chair)

Cllr Kaushika Amin, Haringey Council Cabinet Member for Civic Services (including rollout of support for Universal Credit)

Miriam Bindman, disability rights activist (Disabled People Against Cuts: DPAC)

Chris Baugh, Assistant General Secretary, PCS union

Linda Grant, employment and poverty researcher and Sheffield Heeley Constituency Labour Party executive member

Additional speakers to be confirmed

Local advice groups will have stalls at the meeting Organised by Stop and Scrap Universal Credit Haringey

We are a broad-based group of mainly Labour Party members and Unite Community members that came together to campaign against this cruel benefit system and support people receiving it. 

5 minutes walk from 144 and 41 Wightman Road bus stops. Nearest tube station: Turnpike Lane (Piccadilly Line) 


 Posted by at 15:45
Jan 172019

Shock and anger at government’s failure to invite DPOs to disability workshop

Campaigners have been left “shocked and appalled” by the government’s decision to hold a workshop on the barriers facing disabled people without inviting a single disabled people’s organisation (DPO) to take part.

The Cabinet Office workshop is due to take place tomorrow afternoon (Friday), and its purpose is to “convene leading external experts and officials to discuss the key issues facing disabled people and identify opportunities to address these”.

But it has failed to invite representatives from organisations such as the Reclaiming Our Futures Alliance (ROFA) – which represents many leading DPOs – or The Alliance for Inclusive Education (ALLFIE), and then snubbed their requests to take part when they found out about the event.

Another disabled-led organisation missed off the list of invitees was Disabled People Against Cuts (DPAC).

The Cabinet Office did invite Philip Connolly, policy manager for Disability Rights UK (DR UK), but he was invited as a policy specialist and not as a representative of DR UK.

Mark Harrison, from ROFA, wrote to the Cabinet Office this week to ask if he could attend the workshop but was told it was “already at capacity” and that it was only “an initial exploratory meeting, including officials from Cabinet Office and the Office for Disability Issues [ODI] and a small group of academics and disability charity representatives”.

The civil servant added: “If this initial work develops into a more significant work stream, then we intend to engage with a wide range of disabled person led and smaller groups and will be in touch with details.”

Harrison told her he was “shocked and appalled” by the exclusion of DPOs and said this suggested the government had learned nothing from the recent examination by the UN of the government’s record in implementing the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

In its “concluding observations”, following the examination, the UN’s committee on the rights of persons with disabilities said in August 2017 that it was concerned about the UK government’s “lack of mechanisms to ensure effective participation of all organisations of persons with disabilities, in decision-making processes concerning policies and legislation in all areas of the Convention”.

Harrison said he would now write to the UN committee “with this example amongst many others where the UK Government is still failing to comply with the [UNCRPD] which it has signed and ratified”.

Sue Bott, DR UK’s deputy chief executive, said her organisations only found out about the event from the University of Bristol.

She has been told the workshop will be based on research the university has co-produced with disabled people, including DR UK.

Bott told Disability News Service (DNS): “[The university] did not want to attend the event without disabled people who had worked with them and asked if we had had an invitation.

Philip will be making our objections known at the workshop as will colleagues from Bristol University.

We were disgusted with the response given to ROFA from the Cabinet Office. 

Either they have no knowledge of the CRPD, which is disgraceful in itself, or have chosen to ignore it and the need to engage with disabled people from the very beginning, not at some point down the line.”

She said that DR UK would be happy to sign any joint letter of complaint from the coalition of DPOs – which also includes ROFA, ALLFIE and DPAC – that played a significant role in the review of the UK’s progress in implementing the UNCRPD.

DPAC is also set to inform the UN committee of the government’s actions, which it says are an “ongoing and flagrant violation of our human rights enshrined in UNCRPD to which this government are committed to supporting”. 

DPAC has told the Cabinet Office that it is “horrified and angry” at its behaviour and that of the ODI, and added: “Oh, the irony of holding a workshop to address the barriers faced by disabled people which actually does not include disabled people – only a government department could do this without realising just how appalling it is.”

Linda Burnip, co-founder of DPAC, told DNS that the decision to exclude DPOs from the workshop “ironically serves to illustrate the major barriers disabled people face.

This exclusion highlights the ongoing contempt which this government and its officials show towards disabled people and their lives.

It flies in the face of UNCRPD and the findings of the UN disability committee and can only be described as an utter and total disgrace.”

Tara Flood, ALLFIE’s chief executive, told DNS she was “really cross” at her organisation being excluded from the workshop.

She said: “We are the only DPO working in this area, so who the hell is on this invite list?

Where does this leave article 33 [of the UN convention, which describes how DPOs should be “fully involved” in monitoring the treaty’s implementation] and ‘nothing about us without us’?

If this is genuinely about tackling the barriers that disabled people face, where will disabled children and young people’s barriers fit in that? My feeling is that they are very unlikely to feature.”

A government spokesperson declined to answer a series of questions about the workshop and its UNCRPD obligations, but said in a statement: “We recognise that a variety of groups have important insights to offer – and we will shortly be launching Regional Stakeholder Networks, providing forums for a wide range of people to contribute.”

Only two months ago, the Department of Health and Social Care insisted that it was complying with the UN convention by consulting on its mental capacity (amendment) bill with non-user-led charities like Mencap and Sense.

But 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 UN committee on the rights of persons with disabilities included in its “general comment number seven”, which was adopted last September.

17 January 2019



Universal credit forces wheelchair-user who can’t heat home further into poverty

A disabled benefit claimant with high support needs who has lost more than £40 a week after having to transfer onto the new universal credit – forcing him into even greater poverty – has challenged the government to defend its drastic cuts and reforms.

Mark Golden, from Yorkshire, estimates that he paid more than £100,000 in income tax and national insurance during his working life before he was forced to leave his job by a serious injury at work.

Now the wheelchair-user is having to confront the reality of the impact of the introduction of universal credit on disabled people, after being forced off employment and support allowance (ESA) and onto the new system.

The Department for Work and Pensions (DWP) has repeatedly refused to provide details of exactly how universal credit will affect disabled people in different situations financially, insisting instead that more than a million disabled people will be better off by £100 a month under universal credit.

But Golden’s case appears to demonstrate how many disabled people with high support needs will be forced into even deeper poverty by universal credit.

On 1 December, Golden – who has both physical and mental health impairments – had to move from Bradford to Bridlington so he could be nearer his family, because of his deteriorating health.

Because of his change of circumstances, he was told that he would have to move from the ESA support group – and associated disability premiums – onto the much-criticised universal credit.

He was shocked to be told that he would receive only £149 a week in living costs benefits on universal credit, compared with £191 a week on ESA, severe disability premium (SDP) and enhanced disability premium (EDP).

Out of that £149, he must also contribute £17 a week towards his housing costs.

Out of the remaining £132, he must also pay child support (£10 a week), credit card repayments (£20, after having to replace his fridge-freezer and washing-machine), contents insurance (£2 a week), about £6 a week on his mobile phone (he has no landline or broadband), TV licence (£3 a week), gas and electricity (£27 or £28 a week), and £10 a week he budgets for clothing and footwear (he gets through five or six pairs of trainers a year because he drags his left foot).

He already has to restrict his use of central heating, only turning it on when the temperature in his flat falls below ten degrees, even though he has Raynaud’s disease, which affects extremities such as the fingers and toes in cold temperatures.

This leaves about £50 a week for food and other essentials like toiletries and cleaning products, but that is without the £20 a week he budgets for MOT and car repairs, the £20 a week he previously spent on petrol, which he can no longer afford, and council tax of more than £20 a week he has been asked to pay, which he is hoping the council will reduce.

He has been left with a choice of spending his little remaining weekly income on food, heat or transportation. He is likely to have to sell his car, leaving him even more isolated than he is already.

He will eventually receive some compensation for the loss of SDP – likely to be less than £20 a week extra, backdated to when he moved onto universal credit – once regulations laid before parliament this week are voted on by MPs.

He also receives personal independence payment of £145 a month to cover some of his disability-related extra costs, but he uses this to pay for personal care, provide the support he needs for visits to shops and other busy locations, and to pay for taxis when he is too ill to drive.

In a letter to his MP, the Conservative Sir Greg Knight, Golden described both how inaccessible he had found the universal credit process and the impact on his income, writing: “As a constituent of Bridlington I would like to inform its MP of what is happening in his constituency. And how Universal Credits is so unfit for purpose.

The whole process has left my health even worse and I can totally understand why people are actually taking their own lives due to the process and awards of Universal Credits.”

He told Disability News Service that he wanted the government to explain how it could justify the “dread and high stress levels” caused by the introduction of universal credit, which was leaving him and others with less money and “causing even more hardship and very difficult decisions on what areas you can cut back on in an already frugal lifestyle”.

He said this was “pushing people into even more poverty and hardship” and having a “massive” impact on both their physical and mental health.

He said: “Over the past few years, disabled people of this country have been made to jump through the government’s hoops to receive what they are entitled to, in many cases going through not only the benefit allocation but also the appeals processes.

At times, it makes one feel like you are having to grovel for what you’re entitled to.”

A DWP spokesperson said: “People can access support online, via our helpline or in the jobcentre and Mr Golden regularly uses his online journal to communicate with the DWP.

In some circumstances, home visits can also be arranged to support a claimant with their claim.

Where a claimant is unable to make or maintain their claim online, they are able to do so using the claims by phone process.”

She said the government was “committed to supporting people with disabilities and health conditions.

The SDP is not part of universal credit because we have simplified disability provision within universal credit.

This change ensures that around one million disabled people will receive more in universal credit than the legacy benefits system.”

Despite this, a report by the Commons work and pensions committee suggested last month that even claimants with higher support needs would be worse off under universal credit because of the loss of SDP and EDP, saying that universal credit “does not match what those claimants could have received under the legacy system, with the premia in place”.

DWP continues to refuse to say if it accepts this statement is correct.

Only last week, the minister for disabled people, Sarah Newton, told her Labour shadow, Marsha de Cordova, that it would be too expensive to find out how many disabled people claiming SDP had been moved onto universal credit since June last year – and in the previous 18 months – in circumstances like Golden’s.

Golden will be one of the last recipients of SDP to be moved on to universal credit, at least for several months, as new regulations came into force yesterday (Wednesday) that prevent any further migration of such claimants – apart from those involved in a small pilot programme – until the main “managed migration” process begins next year.

Ministers laid this and another set of regulations before parliament on Monday (14 January), following a statement made by employment minister Alok Sharma on 11 January.

The other set of regulations – which will have to be approved by MPs – will allow the government to run the small pilot, which will involve a maximum of 10,000 claimants of legacy benefits, including ESA, moving onto universal credit, which will begin in July.

The regulations will also provide transitional protection for former recipients of SDP like Golden who have already moved across to universal credit, and those who will do so in the future.

But even when these protections are introduced, ministers have previously suggested there will be compensation of only about £80 a month, compared with potential losses for Golden of more than £180 a month.

The government will report on findings from the pilot before introducing legislation that will allow it to extend the “managed migration” to a further three million people on legacy benefits, including hundreds of thousands on ESA.

The DWP spokesperson said: “The department will be providing a transitional payment to those who have already moved to universal credit who had SDP before they moved and who are eligible. This will be a lump sum and ongoing payments. 

The transitional payments are within the main managed migration regulation package, laid today (Monday), which will be debated prior to the pilot, when parliamentary time allows.

Both the lump sum payment and the ongoing payments will commence after the managed migration regulations are passed.”

She added: “The aim of the pilot is to ensure that claimants on all legacy benefits, with a range of differing characteristics, are successfully migrated to universal credit.

The department is currently working closely with a wide and diverse range of stakeholders to design the managed migration process and we are considering our approach to the pilot.”

17 January 2019



Benefit appeal recordings not possible at nearly half tribunal venues

The government is discriminating against disabled benefit claimants by failing to install equipment at tribunal venues that would allow them to record what happens at their social security appeals, according to university researchers.

Leeds University’s International Disability Law Clinic (IDLC) has discovered that there are no social security tribunal venues across the whole of London that have installed recording equipment.

Such equipment allows disabled people who are unable to make their own notes to have a record of what was said during their appeal.

The figures were released by the Ministry of Justice (MoJ), which also admitted – in the freedom of information response to questions from the law clinic – that it had failed to carry out any assessment of the impact on disabled people of failing to provide such equipment.

Discrimination law experts at IDLC said MoJ’s failings appeared to be a breach of the Equality Act 2010; article six of the European Convention on Human Rights (the right to a fair hearing); and article 13 of the UN Convention on the Rights of Persons with Disabilities (on access to justice).

IDLC, which is based in the university’s School of Law, said this disability discrimination lacked “any objective justification”.

MoJ told IDLC that of 161 hearing centres in England, Wales and Scotland, only 91 (56 per cent) have recording equipment.

The performance in England (recording equipment installed in 52 per cent of centres, or 63 out of 120) is far worse than that of both Scotland (68 per cent) and Wales (also 68 per cent).

MoJ also admitted that the cost of installing the equipment was only about £1,000 per centre, with upkeep likely to be just £15 a year.

The failings emerge after years of rising concerns about the fairness of the disability benefits system, and the number of claimants who are unfairly deprived by the government – and the actions of its private sector contractors – of financial support from benefits such as employment and support allowance (ESA) and personal independence payment (PIP).

An IDLC spokesperson said: “Many disabled people are unable – because of their impairment – to make a written record of what is said during a social security tribunal hearing.

It is often vital that they have access to a record of what has been said during their hearing.”

The failure to allow recordings of these hearings “puts disabled people who are unable to keep a written note of their hearing at a serious disadvantage”, the spokesperson said.

Such claimants could be forced to travel to a more distant venue or buy their own expensive equipment and try to secure the permission of the tribunal judge to use it to record their hearing.

Some claimants may even pass up their right to attend their own hearing, which “is a right of fundamental importance”, said IDLC.

The disability law clinic is currently researching how the UK’s social security system complies with the government’s domestic and international obligations to disabled people.

Its research was backed by a national disabled people’s organisation, the Spinal Injuries Association (SIA).

Daniel Burden, SIA’s head of public affairs, said: “Given the high number of disputed assessments for PIP and ESA, it is unsurprising that disabled people feel it is essential to record tribunals.

For spinal cord injured people with little or no hand dexterity, it is not possible for them to keep written notes.

Audio recordings of tribunals are therefore extremely important and SIA is very concerned by the findings of this research.

We hope that the Ministry of Justice will take swift action to remedy this situation and will ensure that disabled people are not treated unfavourably because of their impairment.”

A spokesperson for HM Courts and Tribunals Service refused to say how it justified so few tribunal hearing centres having the capacity to record social security hearings, including none in London.

She also refused to say why there had been no equality impact assessment, and whether the service accepted that it had discriminated against disabled people and breached the UN disability convention and the European Convention on Human Rights.

But she said in a statement: We aim to provide services that people with disabilities can use independently but know that sometimes additional assistance may be required.

Any request for a reasonable adjustment will be considered so that they can participate fully in hearings.

We are looking at increasing the number of tribunals with recording facilities as part of our wider £1 billion court reform programme.”

17 January 2019



Surprise PIP report raises concerns over ministers’ spending plans

Disabled campaigners have been left bemused and concerned by a report from an independent fiscal watchdog which shows the government’s introduction of personal independence payment (PIP) has led to a sharp rise in spending on disability benefits.

Tory chancellor George Osborne announced in 2010 that the new coalition government planned to cut spending and the number of claimants on disability living allowance (DLA) by 20 per cent by introducing a new working-age benefit.

But instead of leading to a fall, the introduction of personal independence payment (PIP) from 2013 has instead led to accelerated growth in benefits spending, said the Office for Budget Responsibility (OBR) in its annual Welfare Trends Report.

It said: “Disability benefits spending has risen faster than anticipated despite reform aimed to reduce it.

The transition to PIP was intended to save 20 per cent relative to DLA remaining in place, but appears to have cost around 15 to 20 per cent more.”

There were concerns this week that these figures could prompt the government to attempt to tighten eligibility for PIP, with the Department for Work and Pensions (DWP) refusing to say if ministers were considering such a move.

Disabled activists, including those who have campaigned to raise awareness of the unfairness of the PIP regime, have this week been left bemused by the report.

Hundreds of thousands of disabled people have lost support under the move from DLA to the new PIP regime, but they appear to have been outnumbered by the number of successful new claimants.

According to the OBR report, spending on disability benefits – PIP, DLA and attendance allowance (for older people) – continued to rise steadily between 2013-14 and 2017-18, with a rising proportion of the working-age population receiving either DLA or PIP.

These figures are predicted to continue to rise, with the proportion of the population receiving one of the three benefits expected to increase from 7.9 per cent to 8.4 per cent between 2017-18 and 2023-24, and the proportion of working-age adults receiving DLA or PIP predicted to rise from 5.4 to 6.2 per cent.

One explanation for the unexpected increase is that the rise of the internet and social media may have made it easier for disabled people to “navigate the system”, says the OBR.

The OBR has also had to explain why its spending predictions in earlier years were so inaccurate.

In December 2012, it predicted that moving to PIP would save £2.9 billion a year by 2017-18 and that introducing PIP would see a reduction in the number of claimants of 28 per cent by May 2018 (compared with what this number would have been under DLA).

The report produces a series of explanations for this failure.

It says the number of new PIP claims was higher than it had been for DLA; that success rates for new PIP claims were higher than expected; that fewer claimants were reassessed; that reassessment success rates were higher than expected; that fewer claimants were coming off PIP than expected; and that average PIP awards were “significantly higher” than expected.

Another explanation for some of the rising spending is the string of successful legal actions taken against the government, which have led to more claimants being entitled to PIP, and more receiving higher rates of the benefit.

The report says: “There is clearly a risk that future legal challenges to the Government’s interpretation of benefits legislation could expand coverage of the system further, increasing caseloads or average awards.”

And it suggests that there is substantial potential for even higher growth in the number of claimants, adding: “The available data suggest there is likely to be a much larger number of people eligible for disability benefits than currently claim them, giving considerable scope for future growth in the caseload through higher take-up.”

Marsha de Cordova, Labour’s shadow minister for disabled people, said: “The introduction of PIP saw DLA support cut for hundreds of thousands, thousands of people with mental distress unlawfully discriminated against and assessments which wrongly deny disabled people social security. And for what?”

Disability News Service (DNS) spent months investigating allegations of dishonesty at the heart of the PIP assessment system, hearing eventually from more than 250 disabled people in less than a year about how they had been unfairly deprived of PIP.

It continues to receive such reports today, more than two years after the investigation began.

In one case – revealed by a secret recording – a nurse failed to mention a disabled woman’s near-fatal asthma attacks, accidental overdoses and repeated blackouts in her PIP assessment report.

In October 2017, DNS revealed that complaints about the PIP assessment process had risen by nearly 900 per cent from 2015-16 to 2016-17.

Earlier that year, DNS reported unpublished DWP figures which showed that nearly half of disabled people subject to “planned reviews” of their eligibility for PIP were having their existing award either cut or removed completely.

Other DWP figures from 2017, obtained by Disability Rights UK (DR UK) showed that fewer than half (about 126,000) of the 254,000 people previously receiving the higher rate mobility component of DLA secured the same level of mobility support when reassessed for PIP.

Disabled People Against Cuts (DPAC) were among the disabled activists surprised by the OBR report, following years of research and hearing personal testimonies that showed how disabled people have been unfairly deprived of support as a result of the introduction of PIP.

A DPAC spokesperson said that, although more people are receiving PIP than DLA, they have to “go through more hoops” to do so.

She said OBR and DWP had “overestimated the savings” and this had been “driving the denial of PIP to many claimants”.

DPAC said there would now be “concerns, as always, that changes will be made to limit the number of people eligible for PIP”.

Stef Benstead, a disabled researcher and member of the Spartacus Network, said she believed the higher volume of PIP claims was “because the new benefit was publicised and discussed in a way that older benefits, like DLA and ESA (employment and support allowance) aren’t”.

Many of those who had had DLA claims rejected may have thought it worth applying for PIP, particularly those with mental health conditions and high support needs, she said.

And Benstead said the underlying problem was that the government did not understand disability.

She said: “They have grossly underestimated the severity of the functional impact of chronic illness and disability; falsely believe that disability reduces over time; and wrongly think that disability is largely a simple matter to determine.

They simply didn’t realise how many people are severely disabled and how long that disability persists, so they underestimated how many people would be in receipt of PIP.”

Despite the OBR figures, she believes that PIP does not capture the extent of disabled people’s disability and that award rates are too low, “particularly for mobility problems, domestic tasks, and remaining safe and as healthy as possible”.

Ken Butler, welfare rights and policy officer for DR UK, said: “The OBR’s findings will feel like a kick in the teeth to the many thousands of disabled people whose incomes, independence and physical and mental well-being has been blighted by PIP.

Those hardest hit by austerity have been disabled people and this has been a deliberate result of government policy.

PIP is not just failing those disabled people deliberately excluded by its severe eligibility restrictions.

It is also failing those disabled people who are wrongly being refused entitlement to it.  

Over 70 per cent of PIP (and ESA) appeals are found in favour of the claimant.

What the government needs to do is completely overhaul the flawed PIP system and replace it with one that identifies the true extra costs of living with disability.”

The Benefits and Work website added: “Once again a cost cutting reform has proved to simply be an expensive exercise in creating avoidable misery.

It happened with employment and support allowance, it has now happened with personal independence payment and it will happen with universal credit too.”

A DWP spokesperson declined to say whether ministers were happy with the figures showing a rise in spending, rather than the intended cut; whether they would take steps to tighten eligibility for PIP; or what lessons ministers drew from the report.

Instead, she said in a statement: “Our priority has always been to ensure disabled people get the support they’re entitled to.

PIP is designed to focus support on people with the greatest needs and that’s happening, with 31 per cent of people getting the highest level of support, compared to 15 per cent under DLA.

As with any major new benefit we have been flexible and adapted our approach, and we continue to make improvements to ensure PIP is working in the best way possible.”

17 January 2019



DPOs call for support in battle to make ministers think again over attack on rights

Disabled people’s organisations (DPOs) are calling for urgent support to prevent the government “bulldozing” through parliament a “potentially dangerous” bill that will affect the lives and welfare of hundreds of thousands of disabled people.

DPOs including Inclusion London and People First (Self Advocacy) say they are “deeply unhappy” about the flawed mental capacity (amendment) bill, which began its committee stage in the House of Commons this week.

They say the bill will significantly weaken existing rights, and that it will not comply with the European Convention on Human Rights.

The bill will introduce a new system, Liberty Protection Safeguards (LPS), to replace the crisis-ridden Deprivation of Liberty Safeguards (DoLS), that 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.

This week, the public bill committee began line-by-line consideration of the draft legislation, and it will report to MPs with its conclusions ahead of the next stage of the bill.

But Inclusion London, People First and self-advocacy organisations they have been consulting with have major concerns about the bill, even though peers and ministers have ensured some improvements during its passage through the House of Lords.

Among the self-advocacy groups that have joined Inclusion London and People First in raising concerns are Inclusion Barnet, SpeakEasy NOW, North Somerset People First, Wiltshire People First, Bromley Speaking Up Group, Lewisham Speaking Up, Brighton and Hove Speak Out, and Portsmouth Self Advocacy Group.

People with learning difficulties have told Inclusion London and People First that health and care professionals who already have control over their lives would be given even greater powers by the bill.

Inclusion London and People First want to ensure that the bill only deprives disabled people of their liberty as a last resort.

They also point to significant conflicts of interest in the bill, and they say this could force disabled people to live in care homes or to accept physical and medical restraint just because it is easier or cheaper for a local council or service-provider.

They say the bill also fails to ensure the necessary rights to advocacy for everyone facing the possibility of having their liberty restricted; and does not do enough to ensure such cases can be reviewed by a court or tribunal.

Svetlana Kotova, coordinator of Inclusion London’s Disability Justice Project, said: “Last week the government introduced new amendments to the bill, which will water down the duty to inform people about their rights and introduce a deeply flawed definition of deprivation of liberty, which will exclude many cases from liberty protection safeguards, which will mean that professionals will be able to impose restrictions on them without any checks.”

Previously the bill required that individuals were given information about their rights at the beginning of the process, she said, but the government has now said this should happen only after authorisation for a deprivation of liberty has been granted.

Kotova said this would be too late and would come at a point when the only way of redress would be a court hearing.  

She said: “The minister said yesterday (Tuesday) that their goal is to design a simple system which has a person at the centre. 

But this is just words. All government’s amendments, the speed of the bill, their resistance to good suggestions put forward by the opposition, the lack of accessible information and their unwillingness to consult and hear from deaf and disabled people’s organisations indicates to us that despite the rhetoric about a person’s rights, the purpose of the bill is to save money by making life easier for care professionals, local authorities and hospitals, including independent hospitals, at a cost of people’s right to liberty. 

If they wanted to put a person at the centre, they would not take deliberate actions to weaken the rights people already have.”

Inclusion London and People First also believe the government has breached the Equality Act by failing to produce the bill in an easy read format, which would allow those people most likely to be affected by the legislation to understand it.

And they are angry at the government’s repeated failure to consult properly on the bill with DPOs, particularly self-advocacy groups, even though it will affect an estimated 300,000 people in England and Wales with impairments including dementia, learning difficulties and brain injuries.

The Department of Health and Social Care (DHSC) has 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 (UNCRPD).

Inclusion London and People First believe progress on the bill should be halted immediately until there has been proper consultation with disabled people and until the government provides information about the bill in accessible formats.

An Inclusion London spokesperson said this week: “We don’t know why the government are choosing to rush through such an incredibly important human rights bill.

This leaves little time for people who will be affected by the bill to contribute. This is a shocking state of affairs.

The government needs to pause the mental capacity (amendment) bill and get it right, starting by engaging directly with disabled people.”

A DHSC spokesperson said: “The current system for keeping vulnerable people safe is unworkable, with 125,000 people waiting for legal protections, and we cannot let them down by pausing the bill.

Our urgently needed reforms are based on the Law Commission’s three years of consultation with the third sector and disabled people’s organisations.

The department is committed to listening to the views of those affected and has engaged directly with individuals with dementia and learning disabilities and their carers, and has met with representatives from user-led groups.

An easy-read version of the bill is being produced and will be published shortly.”

Nearly 150,000 people have now signed a petition drawn up by Inclusion London that calls for major changes to the bill.

The call for evidence to be submitted to the public bill committee was only issued on 19 December, and the deadline is expected to be next Thursday (24 January), or even earlier.

Inclusion London and People First are now calling on disabled people and allies to express their concerns about the bill on social media, using the #mentalcapacitybill hashtag; email the public bill committee by 24 January at the latest; and write to their MP, using a template letter drawn up by Inclusion London, which will be posted on its website.

17 January 2019



Equality watchdog needs further legal powers, MPs are told

The equality watchdog should be given greater powers that would allow it to take more legal cases against organisations that breach the Equality Act, a disabled former commissioner has told MPs.

Mike Smith, who chaired the disability committee of the Equality and Human Rights Commission (EHRC) between 2009 and 2012, told the Commons women and equalities committee that it was impossible for many people to take legal action to enforce their rights under the Equality Act 2010.

Smith, who is now chief executive of the disabled people’s organisation Real, said: “For many disabled people it’s de facto impossible to achieve justice in many areas.”

He said this particularly applied to cases alleging discrimination under the act by service-providers.

He and other equality experts who gave evidence to the committee yesterday (Wednesday), as part of its inquiry into how the EHRC is enforcing the act, said the commission needed to be able to take far more legal cases.

Smith said the EHRC should be allowed to take cases in its own name on behalf of claimants, which would allow legal action from individuals who “just didn’t have the life circumstances or the capacity” to do that themselves.

He also suggested that the commission should be allowed to support class actions on behalf of multiple claimants, and that enforcement of the Equality Act should be amended so people could bring cases before the small claims court, which in England and Wales allows claims of up to £10,000.

He said this could “allow a much deeper range of challenge to the kind of pervasive inequality and disadvantage that people often experience”.

He said the risk of service-providers “getting caught” for breaching the Equality Act was “pretty low”.

He said: “I don’t think most organisations think that there is much risk associated with breaking the Equality Act, either in terms of reputation or the financial consequences.”

Smith contrasted this with the US, and its Americans with Disabilities Act, where courts produce far higher levels of damages.

He said: “Any time I go to the States I am always amazed at how much more effective the manifestation of the legislation is.

Maybe we need to look harder at how there are consequences for organisations for breaking the law in the first place and that might sharpen their minds.”

Smith also told the committee that the EHRC should find a way to hold the government to account on its failure to implement the UN Convention on the Rights of Persons with Disabilities.

He believes the failure to realise rights in the convention is as big an issue – if not bigger – for disabled people as discrimination.

But he told the committee that the commission had changed the lives of many disabled people with legal action it had taken recently, including forcing 13 NHS clinical commissioning groups to withdraw unlawful, discriminatory policies that could have seen service-users with complex healthcare needs forced into institutions.

He also praised its support for a significant legal case which saw the high court rule last year that disability benefit rules were unlawful and “blatantly discriminatory” to people with mental distress.

Niall Crowley, an equality and human rights expert and former chief executive of Ireland’s Equality Authority, told the committee that the EHRC was one of two equality bodies across the European Union (the other is Poland) that had suffered “disproportionate” cuts in funding, cuts which he said have “a hugely chilling effect on the work of equality bodies”.

He said such cuts are “particularly damaging” to the efforts of such bodies to enforce equality legislation.

Crowley was also critical of the commission’s policy of “strategic litigation”, taking only high-profile legal actions.

He said: “If you pursue a strategic litigation strategy that is purely about high-profile, precedent-setting cases you get greater clarity about the law but you don’t get a culture of compliance.”

He said equality bodies like the EHRC needed to take a “critical mass of cases” across the areas covered by equality laws.

Barbara Cohen, a discrimination law consultant and former head of legal policy at the Commission for Racial Equality, told MPs that the EHRC needed to be more of an “enforcer”.

She said it needed to do more to advertise its legal successes and create a “sense of fear”.

She said: “Just beginning to shout, ‘We are the big bad wolf and we are coming for you,’ just hasn’t happened… people are not frightened of the EHRC.”

Nick Webster, a senior solicitor at lawyers Leigh Day, said the government’s decision to remove the commission’s conciliation and mediation powers had not been helpful.

He suggested that these powers should be returned, while the commission should also be given new powers to act as an ombudsman.

This would mean that employers would know they do not have to just deal with a tribunal, the employee taking the case against then, and their union, but also with “a government body that is potentially going to come and look at what they are doing and issue fines as necessary”.

He said: “You hope that people do learn [after losing an Equality Act case]. In my experience they don’t. You hope that they will change their behaviours. In my experience they don’t.

That’s because they can just deal with that issue… and move on.”

But if employers know that losing a discrimination case “isn’t the end of it” and that they could face further action from the EHRC, they could be forced to make significant changes to how their organisations operate, he said.

17 January 2019



Double legal victory for access campaigner over underground discrimination

A court has found that London Underground twice discriminated against a disabled campaigner by failing to warn him that vital lifts that would allow him to complete his journey on the capital’s tube network were out-of-order.

Doug Paulley found himself stranded and confronted with inaccurate and incomplete information and unhelpful staff on trips to London in October 2016 and May 2017.

A district judge has now ruled that London Underground breached its duty to make reasonable adjustments for its disabled customers by failing to let Paulley know about lift closures on its network.

The judge ruled that it was not reasonable for London Underground to expect wheelchair-users and other passengers who rely on lifts to check the organisation’s website for closures before every journey they make.

London Underground will now have to do more to alert passengers when its lifts are out of order across the 12 stations with step-free access in the central zone, which should include placing white boards at station entrances to ensure passengers know about problems before they start their journey.

The judge said that such measures “would not in any way place an unreasonable burden on the defendant’s resources”.

He also made it clear that he knew Paulley was more interested in the principles he was fighting for than in securing damages from London Underground.

On the first occasion, Paulley had been hoping to travel to King’s Cross from Westminster tube station, but he was left confused by a sign informing him that one lift was out of order and directing him to another entrance.

When he reached that entrance, he found that lift was also out of order.

Seven months later, he was travelling to King’s Cross by tube to catch a rail connection but had not been told that a lift at the station was out of order.

After initially refusing to speak to him face-to-face or discuss other options other than catching another tube to retrace his journey, returning to the surface and catching a bus back to King’s Cross, London Underground staff eventually agreed to help Paulley up the escalator in his wheelchair.

Although Paulley was able to catch his train, the judge said he was “unimpressed by the handling of the incident” by London Underground, which had initially taken an “intransigent” attitude, increasing Paulley’s frustration and causing him “detriment and worry” until a solution was found.

It is not the first time that Paulley has succeeded with a legal bid to persuade London Underground to improve the information it provides to disabled passengers.

Six years ago, after settling another case out-of-court, London Underground promised to update more frequently its website and written guides which show which tube stations are accessible.

But Paulley says London Underground failed to do that.

He was critical this week of London Underground’s failure to settle his latest case out-of-court, which has now led to him being awarded £1,000 in damages by the judge for the King’s Cross incident and £800 for the Westminster incident.

He said the “sloppy lack of adherence” to procedures and standards designed to minimise disabled people’s inconvenience by London Underground staff had been “shameful and unacceptable”.

He said: “I am amazed and disturbed that London Underground would spend so long, and so much money, fighting to defend such behaviour.”

He said its staff had failed to follow “clear procedures” as to what they could and should do to warn disabled people about lift failures at two key step-free interchanges, Westminster and King’s Cross.

He said: “If they don’t follow them there, then what chance have we that they will follow them elsewhere?”

He added: “I very much hope that in future they adhere properly to suitable procedures for disseminating information and taking action when lifts break, such that other disabled people don’t go through what I did.”

Mark Evers, London Underground’s chief customer officer, said: “Making London’s transport network more accessible is one of our top priorities and we understand how challenging it can be for our customers when lifts are taken out of service, either for planned maintenance or due to a fault.

We apologise to Mr Paulley for failing to provide him with the relevant information to carry out his journey.

We try hard to alert our customers in advance to any issues, for example through real-time lift information on our website, and to provide up-to-date information at stations and on trains.

We are also introducing an initiative at all step-free stations which involves distributing prompt cards to station staff to remind them of the actions to take when a lift goes out of service.

However, we acknowledge that there’s more to do. We will be considering the county court’s ruling in relation to these cases.” 

London Underground said it had introduced a real-time information app for station staff which allows them to report lift faults – via their iPads – directly to the control centre.

It is also installing “poster frames” next to lifts in these stations and printing posters with key alternative routes that can be quickly used if there is a lift fault, a system which should be introduced at all step-free stations by the spring.

The court victory is just the latest of a series of legal bids and other campaign actions taken by Paulley in a bid to push service-providers to improve the country’s inaccessible public transport network.

His most high-profile success came almost exactly two years ago, when the Supreme Court ruled that First Bus had breached its duty to make reasonable adjustments for disabled people under the Equality Act through its “first come, first served” policy on the use of wheelchair spaces.

But Paulley has also secured high-profile campaign successes after taking on providers across the coach, train and taxi network.

And only last week, Disability News Service reported how he revealed the inaccessibility of supposedly wheelchair-accessible coach services provided by National Express after taking nine journeys on the same day and experiencing significant problems on all but one of them.

17 January 2019



Project highlights need for museums to take ‘radical’ action on disability employment

Museums need to take radical action to address the “woeful” under-representation of disabled people in their workforce, a parliamentary event has heard.

The call was delivered by Esther Fox, the disabled leader of the Accentuate programme, at a House of Commons event held to mark the end of the three-year History of Place project, which has charted the lives of disabled people across eight heritage sites and 800 years.

Accentuate also called for moves to ensure that deaf and disability history becomes part of the country’s collective history, with more museums and heritage attractions giving this “equal prominence” in their displays and exhibitions.

Fox told the Commons event: “Sustained change takes time and we believe it will not happen unless there are deaf and disabled people working as part of our cultural organisations at all levels.

However, deaf and disabled people are woefully under-represented in the workforce of our cultural sector.”

She told guests of “some rather shocking statistics” that showed that disabled people made up only 2.6 per cent of museums’ workforce, and contrasted this with History of Place, where 49 per cent of staff were disabled people.

She added: “This demonstrates that change is possible in the cultural sector if the right opportunities are there and those with specialist knowledge and experience are leading them.”

In a report on the project, Accentuate delivers a 13-page “call to action”, which includes recommendations to improve employment and volunteering opportunities for disabled people within the heritage sector, and for organisations in the sector to include the “hidden histories” of deaf and disabled communities in their displays, exhibitions and events.

Accentuate, which works to create opportunities for disabled people in the cultural sector and is part of the cultural development agency Screen South, is now working on a professional development placement programme for a group of disabled curators as a contribution to the changes needed in the sector.

It says in the call to action: “We believe it is particularly important to have deaf and disabled people in decision making roles in our cultural institutions.”

Fox told Disability News Service (DNS) afterwards that it was now important to take this message and “really hammer it home”.

She said: “People should really start to take responsibility. It’s not good enough to have organisations being [publicly] funded if they are not addressing these issues.”

She said Arts Council England was starting to address the issue through its Creative Case for Diversity, and was making funding dependent on addressing issues of diversity in recruitment.

Fox said: “We are at that point where we need to be quite radical. Just saying, ‘Oh well, we’ve tried,’ is not good enough.”

She said she was not that surprised that the problem was worse in the museum and heritage sector than the arts sector because of the politicised history of disability arts.

She said there had not been the same level of politicised engagement with museums, which were “often seen as shrines to preservation rather than social hubs”.

Fox said the History of Place project, which worked with more than 100 volunteers to “excavate the archives” of the eight sites, had been recognised as a “nationally significant” social history programme and demonstrated that disabled people are “integral to the UK’s heritage and culture”.

It also worked with 111 museum, heritage and archive institutions, including three high-profile exhibitions and displays at the Victoria and Albert Museum in London, M Shed in Bristol and the Museum of Liverpool, each of which was visited by more than 140,000 people.

Fox told guests at the event: “We have uncovered rich and unexpected stories about the lives of deaf and disabled people who not only impacted on our communities but also on our built environment, from a blind nurse in a medieval alms house… to the amazing pioneer Maggie Davis, who was determined not to be incarcerated in an institution and worked with architects to build the first fully wheelchair-accessible home.

These pioneers were intrinsic to the world around them and they left a mark which is only just beneath the surface, requiring only a small amount of excavation to uncover.”

Each of the eight heritage sites had a significant connection to disabled people, including Maison Dieu, in Kent (a medieval alms house and hospital on the pilgrimage route to Canterbury); the Guild of the Brave Poor Things, in Bristol (opened in 1913); the Grove Road housing scheme, in Sutton-in-Ashfield, Nottinghamshire (commissioned in 1976); and the Royal School for Deaf Children, in Margate (founded in 1792).

Fox told DNS that the nature of archives, collections and records relating to disabled people meant there were rarely any documents from the perspective of people with lived experience themselves, with records usually created by “gate-keepers”, such as doctors and teachers.

She said she hoped the project would now persuade the heritage sector to “start diversifying their collections”, to ensure that the voices of deaf and disabled people are heard.

She said: “There is more stuff to be discovered. I think there have got to be things in their own collections where they are maybe not aware of their significance or have been hidden away in a box somewhere.”

In the call to action, Accentuate says: “If a museum only has a small number of artefacts relating to deaf and disabled people’s history we would suggest they consider making new acquisitions, to provide a more well-rounded reflection of the communities they represent.”

Fox told DNS that she would like to see museums become more radical and accessible to all and become a “hub for social activity and cohesion”.

She said: “The museum partners we work with have been incredibly supportive.”

But she said it was frustratingly difficult to produce even small change in the largest institutions, because there are “so many levels you have to get through before anything can be done”.

She suggested the opportunities to be more radical lay in the “middle range of museums, because they have a bit more profile, more money [than smaller museums] but they have more freedom than a really large institution.

So I think it can happen and there is a will and I think now is the right moment to really galvanise more people around this sort of movement.

I think there’s a will there. There are enough people that do want to see change happening.”

Ros Kerslake, chief executive of the Heritage Lottery Fund (HLF), which funded History of Place, had earlier given Accentuate’s “call to action” a “ringing endorsement”.

She said the project had started to fulfil the pledge made by her organisation in 2015 to support more disabled-led heritage, and both put “deaf and disabled people’s heritage in the spotlight” and “demand change from heritage organisations”.

She said: “We are determined to continue this commitment and inspire and support more projects like History of Place, projects that create a more diverse workforce and ensure that people who visit and benefit from heritage are truly reflective of the UK society.”

Damian Collins, the Conservative MP and chair of the Commons digital, culture, media and sport committee, who sponsored the meeting, said Accentuate’s work was “genuinely ground-breaking and refreshing”.

And he welcomed HLF’s willingness to fund “different perspectives on heritage and tell different stories, maybe stories that weren’t told about before”.

17 January 2019

News provided by John Pring at www.disabilitynewsservice.com


 Posted by at 14:22
Jan 152019

Reblogued from @SpeyeJoe’s blog: No job? Kids? Then you’re homeless is Tory policy. Why don’t Shelter know this? https://speyejoe2.wordpress.com/2019/01/13/no-job-kids-then-youre-homeless-is-tory-policy-why-dont-shelter-know-this/

The Overall Benefit Cap policy which limits a household to £20,000 per year in ‘welfare’ and £384.62 per week will mean that in 2027 the two parent three child household will not get a penny in housing benefit.

Is it irony for the Shelter Commission report this week investigating social housing for the next 20 years has a picture of a mother and child on its cover and a lone parent with one child in 20 years will not be able to afford the cheapest council housing Shelter demand is needed due to the Tories Overall Benefit Cap policy?

This week the DWP announced that tax credits will be paid for the 3rd child (if born before 2017) and that welfare benefits will rise and be unfrozen and I assume they will rise by the CPI rate of inflation.


The quick table above shows that in 2019 the two parent three child household (2P3C) gets £323.45 in ‘welfare’ plus a maximum of £61.17 in housing benefit.  The table then increases the £323.45 other welfare figure by 2.2%, the current CPI rate of inflation, each year and by 2027 this reaches the Overall Benefit Cap limit of £384.62 meaning the 2 parent 3 child household will not get a penny in housing benefit.

Where will they live?

Council and housing association landlords will not house them as they cannot pay the rent, they cannot afford the rent and what we have is the cheapest rented housing that will call social housing will see social landlords operating a blanket NO DSS policy as private landlords have done for decades.

Using the same method of welfare increasing by CPI in 2034 the lone parent with 3 child household will not get a penny in housing benefit and in 2038 the two parent 2 child household will not get a penny in housing benefit.

The Overall Benefit Cap (OBC) policy kills off the 1948 Welfare State housing safety net and directly creates ever-increasing homelessness with its systemic flaw that I first mentioned in 2012 of its cap or limit remaining a constant while ‘welfare’ and rents both increase.

The OBC means the social landlord model is dead as the proverbial Dodo as councils and HAs will not house those in housing need as they simply cannot afford to.  I cautioned social landlords at their euphoria over the return of inflation-busting rents from 2020 (CPI inflation plus a further 1%) that will also lead to NO DSS for their 400,000 social housing lets they have each year and of course for the mass eviction of existing tenants that the combination of welfare and rent rises will create as an unambiguous inevitability.

NO JOB NO HOME as well as NO DSS becomes the norm for council and housing association landlords

Look at the following table for the lone parent 2 child household which uses the same method of welfare rises of (2.2%) CPI inflation and social housing rent rises of 3.2% and CPI plus 1%


By 2027 the lone parent with 2 children will get a maximum housing benefit of £129.33 and the rent will be £131.99 and a shortfall arises of £2.66 per week.  Yet 2 years after that in 2029 this housing benefit shortfall has increased to £22.60 per week and in a further two years by 2031 doubles to £43.60 per week … which means that councils and housing associations in the cheapest rent areas of the UK cannot afford the ‘benefit tenant’ with 2 children. It means the eviction of existing lone parent two child households and denies the allocation of social housing to them (NO DSS)

It further means that council and housing association landlords can ONLY house those in work for the near 40% of all social housing that is 3 bedrooms or larger.  The benefit tenant ghetto is what council and housing association housing becomes. It also means any household with two children cannot live anywhere if they have no job. It means NO JOB NO HOME.

This past week has also seen the Shelter Commission Report that calls for 3.1 million social housing properties to be built over the next 20 years or 155,000 new houses described as ‘genuinely affordable’ and meaning houses are social rent.  Yet what is the point if none of those allegedly ‘genuinely affordable’ houses will not be allocated to the benefit households or those most in housing need due to the OBC and inflation-busting social rent rises?

The OBC policy means NO JOB NO HOME and means NO DSS in even the cheapest rented properties of council and housing association landlords.

The Shelter Commission report claims to look at housing until 2039 yet by that time the lone parent with 1 child household will have a housing benefit shortfall of £35.63 per week in the cheapest form of social housing.  Hence by 2039 at the latest council and housing association landlords will not house any benefit tenant household who has children!!

Remarkably the OBC policy has an approval rating of over 70% and just as offensively the last Labour Party general election manifesto called for a reduction in the OBC limit – both of which show that the electorate and all politicians don’t have a clue about the OBC policy and what it inevitably means which is I remind again NO JOB NO HOME and NO DSS being the norm and the eradication of the 1948 Welfare State.

The Tory OBC policy not only has the cap as a constant figure and with it the systemic flaw but in 2017 the Tories reduced the cap by 23% from £26,000 per household per year to £20,000 per household per year (and to £23k pa in London.)

The Shelter Commission did not mention the OBC policy and did not consider it in their report despite the fact it will systemic create ever-increasing homelessness and NO DSS in the cheapest rented housing that we misname social housing.  Excuse me reader but isn’t Shelter’s rationale to fight homelessness and yet they do not even see the inevitable OBC impact of mass homelessness and mass social housing NO DSS!!

Note well that figures unlike politicians, lobby groups and social landlords DON’T LIE and when the creation of those figures is THE most basic of basic spreadsheets that a 7 year-old can do then why the hell can’t politicians, landlords and the likes of the Shelter Commission take 2 minutes to create such as simple spreadsheet?

All of these actors claim to care about homelessness yet they do not know their arse from their elbow when it comes to the systemic creation of ever-increasing homelessness do they?

 Posted by at 22:54
Jan 132019

NHS Plan Unfit! No to cuts, rationing and privatisation.

Signup at the Facebook Event Page

Thursday 31 January. 10:00am to 1:00pm
Skipton House, 80 London Road Elephant and Castle, London SE1 6LH.

Please come and join fellow KONP supporters in protesting the government’s NHS long term plan. Called by National KONP and Lambeth Keep Our NHS Public.

All of the main lines of what has been published or leaked about the Plan are a depressing re-run of previous plans and gimmicks: the only novel proposals are for more central control and less accountability, for trusts to run more like and with private businesses seeking profits, and to raise money by undermining the principles and values of the NHS through charging overseas visitors – a government policy widely condemned by NHS professional staff and campaigners as discriminatory and a step backwards from prevention and public health. There is no reason to believe this plan, with even less local accountability and no serious plans for public consultation, will prove any more acceptable to the public or successful in implementation than the secretive STPs in 2016 or other previous failed efforts. Campaigners have yet to see anything to recommend the new plans, or any indication NHS England is willing to come to grips with the crisis fuelled by chronic austerity limits on funding – or demand an end to chaos and fragmentation of the Health & Social Care Act.

Join the rally and bring your friends!

 Posted by at 16:26
Jan 102019

Home Office’s ‘inhumane’ deportation decision poses ‘risk to life’

Autistic rights campaigners are calling on the government to reverse its “inhumane” decision to ignore detailed, independent medical evidence and force a young disabled man with high support needs and his family to return to India.

Disabled activists from Autistic UK say the medical evidence proves that Gopul Anand is not well enough to make the journey and that the UK government’s attempt to deport him and his family is a “grave breach” of the European Convention on Human Rights.

Gopul is autistic, and also has schizophrenia, epilepsy and learning difficulties, and his family insist – backed up by evidence from experts including social workers and his mental health team – that he is too ill to travel because of the risk both to his own health and the safety of other passengers.

British Airways has even told the family that it would not allow 24-year-old Gopul to fly with the airline because of his current poor health.

Errol Kerr, chair of Autistic UK, said the Home Office’s “lack of consideration” for Gopul’s situation was “horrifying” and suggested “a wider attitude towards disabled people and immigrants”.

Gopul’s father Shekhar, a social and economic development expert, who has worked with Oxfam for 15 years in Africa, Asia and the UK, has told the UK government that his family accepts its decision that they must return to India, but is pleading for time for his son’s health to improve.

Shekhar originally came to the UK with his family seven years ago for a senior position in Oxfam’s Oxford office.

Gopul had been educated in a mainstream school in India, but his mental health deteriorated sharply following the death of an uncle in 2013.

His parents tried to take him on a flight to India that year to visit family, but he was too unwell to travel.

His health dramatically deteriorated even further the following year, and he was eventually sectioned and spent time in an assessment and treatment unit (ATU) in 2015.

Gopul spent 10 months in the ATU, and his family had to appeal to a tribunal to have him released. He still has nightmares and flashbacks because of the abuse he experienced at the hands of a member of staff at the unit.

He is also self-harming and experiencing hallucinations and panic attacks, and is currently so unwell that it is almost impossible for him to leave the family home in Cowley, Oxford, to attend events where he might interact with strangers.

Two years ago, Shekhar’s visa expired, and he and the family have now submitted detailed, independent evidence to the government that shows why Gopul is not well enough to travel back to India.

One of Gopul’s support workers has described how his condition has deteriorated in the last year and said that taking him to India would be “practically impossible and very risky for Gopul, family and any members of the public present during the journey by any means of transport” and that escorting him would be “unsafe and dangerous”.

The move to India, she said, could cause “irreversible damage” to his mental health.

His mental health team agrees and says his condition has deteriorated in the last 12 months, with an increase in his impulsive behaviours, and that he has become increasingly unsettled, aggressive and violent.

They say it would cause him “extreme anxiety” to travel to India and that he would be a threat to himself and other passengers.

Shekhar said: “The risk is that he will get into severe depression and he will not be able to come out of it. There is a risk to his life.”

As well as the risks to his health from the anxiety caused by the flight itself, and the lack of family support in India, Shekhar is also concerned about attitudes in India to autistic people and those with mental distress, and the lack of services to support autistic people and treat Gopul’s mental ill-health.

He said: “The social acceptance is not there. If he goes out by himself maybe some people could throw stones at him and kill him.”

Shekhar said there was a “social taboo” in India about mental health which would prevent Gopul being accepted.

He also pointed out that there is a global average of 3.96 psychiatrists per 100,000 people, whereas in India this figure is just 0.301.

He said: “Gopul will neither feel safe nor get the same level of services as he is getting in the UK. 

We are really, really worried. It is a dire situation. It is a risk to his life.”

A tribunal ruled last February that the Anands would have to leave the UK, and they were refused permission to appeal in September.

Shekhar then approached Gopul’s doctors for a medical review and they concluded that he was not well enough to travel.

The family’s solicitor told the UK Visas and Immigration (UKVI) service in a letter in November that it had made “arbitrary and hollow statements” in response to the detailed and independent medical evidence provided by the family, and did not understand why UKVI could not consider this as evidence to justify discretionary leave to remain in the UK.

The letter added: “Our client and his disabled dependant are left in a limbo being crushed between medical opinion and the UKVI policy.”

The Home Office has now told the family that it will not reconsider its decision, despite the concerns over Gopul’s health, but that they can lodge a fresh application to seek discretionary leave to remain in the UK.

This new application will cost them about £10,000 in legal fees and costs. The family have already spent nearly £20,000 in applying for leave to remain in the UK, and say they have wasted two years waiting for a decision on their application.

Because of the government’s refusal to extend their visas, Shekhar’s wife Anima has been forced to turn down a job offer.

His other son, Atul, who has been paying international rate fees for the last three years, has had to interrupt his computer science degree at the University of Bath and will need to return to India and then apply for a student visa so he can continue his studies.

Autistic UK, which is run and controlled by autistic people and has supported the campaign to persuade the government to change its position, said the Home Office appeared to consider “invisible” impairments such as autism and mental distress as “ineligible” in deciding whether there should be a medical exemption in such cases, which “is plainly discrimination”.

Errol Kerr said: “The lack of consideration the Home Office have for the situation Gopul is in is horrifying.

However, it is not an isolated one. Instead it is indicative of a wider attitude towards disabled people and immigrants held by the Home Office itself.

Whether this is due to wilful ignorance or a lack of understanding matters little – Autistic UK are deeply hurt that the very real needs of a multiply disabled individual are being ignored and we feel we have no choice than to stand with Gopul and his family, and show our support to those whose lives are similarly undermined.”

The Anand family have been supported by their MP, Labour’s Anneliese Dodds, who has called on the Home Office to re-open the case because of the new medical evidence that has emerged since the tribunal decision.

They have also launched an online petition in the hope of putting further pressure on the Home Office to reconsider its decision.

Shekhar said: “We are just asking for the Home Office to give us some more time, maybe six or eight months or a year.

The moment the doctors say he is fit for travel, we will be able to take him back to Delhi.”

A series of Home Office spokespeople repeatedly promised that the department would release a statement about the case, but it had not done so by noon today (Thursday).

10 January 2019



ROFA lays out plans to make the right to independent living a reality

Campaigning disabled people’s organisations (DPOs) have set out their demands for a new national independent living service that would eliminate the postcode lottery in support, and finally make the right to independent living a reality.

The Independent Living for the Future document has been developed over the last 14 months under the banner of the Reclaiming Our Futures Alliance (ROFA), whose members include Disabled People Against Cuts, Inclusion London, People First (Self Advocacy), Greater Manchester Coalition of Disabled People, The Alliance for Inclusive Education and Shaping Our Lives.

ROFA will now seek support for the document from its members, political parties, disabled people, DPOs and other organisations.

Independent Living for the Future is based on principles laid out in the UN Convention on the Rights of Persons with Disabilities.

Article 19 of the convention describes how countries signed up to the convention – like the UK – must recognise the right of all disabled people “to live in the community, with choices equal to others”.

The new document describes how the rights in article 19 could be upheld through a new national independent living service, which would build on “what was most successful” about the former Independent Living Fund.

The new service would be “co-created between government and disabled people, funded through general taxation, managed by central government, led by disabled people, and delivered locally in co-production with disabled people”, says the document.

It would be free, non-means-tested and “provided on the basis of need, not profit”.

There would also be funding for DPOs to deliver local services, ensuring a range of options to support disabled people to live in the community and exercise choice and control over their support.

Priorities would include setting up a new independent living taskforce, led by disabled people, to develop plans for the service; and agreeing how to introduce a legal right to independent living, including an independent living bill of rights.

There would also be a need, says the new document, to educate the public about the benefits of investing in independent living support for disabled people.

The document also calls for the government’s Office for Disability Issues to be moved out of the Department for Work and Pensions and placed within either the Cabinet Office or the Government Equalities Office.

And it says there should be a strategy for investment in local user-led services alongside the closure of institutionalised, segregated settings including long-stay hospitals and assessment and treatment units.

The document points out that government austerity cuts have had “serious adverse impacts” on the rights contained in article 19, with the social care and mental health systems in crisis and disabled people’s rights being taken “dramatically backwards”.

It says that grassroots campaigning by disabled people since 2010 has focused heavily on the right to independent living, partly because activists are so proud of the independent living movement and its achievements.

It adds: “At a time when discrimination continues to exist legally, structurally and within many parts of society, daily living conditions are deteriorating and the odds against us seem overwhelming, it is enormously important to be able to draw on a source of pride that sits at the core of our shared identity.”

The ideas behind the document began to be discussed several years ago with disabled activists involved in the campaign set up in 2011 to stop the planned closure of the Independent Living Fund.

More recently, there have been discussions at the National Disabled People’s Summit in November 2017, the Independent Living Campaign Conference later that month, and a ROFA round table event last May.

10 January 2019



Motability set to spend millions more on grants for adapted vehicles

The Motability car scheme is set to increase substantially the number of grants it makes to disabled people with high support needs that allow them to lease an adapted vehicle, MPs have been told.

The move would be a success for disabled campaigners who have long called for Motability to use more of its substantial resources to fund expensive, heavily-adapted vehicles for disabled people who would otherwise be unable to engage in their community.

Lord Sterling, the co-founder of the scheme and chair of the Motability charity, made the pledge to increase the number of grants during a joint evidence session held yesterday (Wednesday) by the Commons Treasury and work and pensions committees.

The committees are holding a fresh inquiry, following a critical report last month by the National Audit Office (NAO) which raised significant concerns about Motability Operations, the company which runs the scheme on behalf of the charity*.

Only disabled people receiving the higher mobility rates of disability living allowance (DLA) or personal independence payment (PIP) – or similar payments for former members of the armed services – are eligible to join the scheme.

The evidence session saw MPs raise concerns about the level of financial reserves held by Motability Operations, high rates of executive pay at the company, and a lack of transparency by its chair, Neil Johnson, as well as the “cosy” relationship between the charity and the company.

Another key issue was what the charity would do with £400 million in donations handed to it by Motability Operations, with the expectation of a further and continuing £100 million a year, as a result of profits that were more than £1 billion higher than forecasted between 2007-08 and 2016-17.

Labour’s John Mann, a member of the Treasury committee, said there was a disabled young woman who lived in a rural area of his Bassetlaw constituency and had been refused a grant for an adapted vehicle which she needed to drive to her first job.

He questioned why such grants were being rejected when Motability Operations held £2.62 billion in reserves in March 2018 and was paying its executives such large salaries and bonuses (in 2016-17, the company’s chief executive Mike Betts received a total financial package of £1.7 million).

Lord Sterling told the MPs that the charity knew there was unfulfilled demand for grants to adapt vehicles for disabled people with high support needs.

He said: “We know there’s a much bigger demand… we want to do many more of these cars for the more severely disabled.”

But he admitted that the charity did not yet have a long-term strategy for spending the new funds donated by Motability Operations, although he said the money would all be spent “over a period”.

Paul Atkinson, the charity’s new chief executive, said the cost of a wheelchair-accessible vehicle can be up to £60,000, with the charity currently making £23 million in grants every year for about 8,500 people to lease adapted vehicles [many of these grants are for less expensive wheelchair-accessible vehicles].

He said: “What this donation will allow us to do for an awful long time into the future… is increase the number of people who are able to receive those grants.”

He was also asked whether some of the new money could be spent on allowing disabled people to keep their Motability vehicles until the end of their three-year lease period if they lose entitlement to PIP or DLA during that time, as tens of thousands have done since the introduction of PIP by the coalition government in 2013.

Although Atkinson did not appear to answer this question, he did say that the charity already considered such requests on a case-by-case basis.

He said the charity was about to launch an extensive consultation process to ask how it should spend the extra funds donated by Motability Operations; there will also be a review of the level of reserves being kept by the company.

The session saw representatives of both Motability Operations and the charity answering critical questions from MPs on the two committees.

While praising the way the scheme was run and the service it provided to disabled people, Frank Field, the Labour chair of the work and pensions committee, questioned whether it was “value for money” and whether it could be provided for lower payments for disabled customers.

Sir Amyas Morse, the head of the National Audit Office, said this was possible, but he added: “We are talking about a success. And it’s very seductive to start picking a success to pieces.”

He said it was “reasonable” to challenge Motability Operations to reduce the “substantial” level of “over-profits” and “deliver a leaner operation”.

And he said the committees were right to be concerned about the levels of executive pay at the company.

He also said the government needed to take a “much more active part in shaping the future” of Motability Operations and then “guiding that future forward”, while there was a need for a “much more muscular” model of governing the company.

He said: “These issues aren’t going to go away without significant change in the way this is operating. It’s valuable, it’s a success, but there does need to be change.”

In response to one MP, Lord Stirling was forced to admit that there were currently no black and minority ethnic governors on the charity’s board, and only one woman.

Nicky Morgan, the Tory chair of the Treasury committee, also asked why the charity had not once since 2013 sent one of its governors to attend the Motability Operations committee that is responsible for setting levels of executive pay, even though the charity had sent letters expressing concern about the issue in both 2012 and 2016.

She said: “The difficulty is that everything I’m hearing so far is there has been a very long-term cosy relationship between the charity and the company.

I think over the years you have done amazing work, but you have forgotten this is an arms-length relationship.”

Lord Sterling told her: “With hindsight, maybe one should have made sure someone should have attended it.”

MPs also asked about the company’s earlier failure to disclose nearly £2million in bonuses that were due to be paid to Betts by 2022.

Mann, a long-standing critic of Motability Operations, accused Neil Johnson, chair of the company, of hiding the full value of the incentive scheme.

He said: “You’re a monopoly underpinned by the taxpayer and I’m asking a simple question: why were you hiding that amount of money?”

The Conservative MP Charlie Elphicke, another Treasury committee member, said Johnson’s evidence had been “evasive” and that there had been “a lack of openness, a lack of transparency, a lot of defensiveness”.

He suggested that, even if Motability Operations had not breached the “letter” of the Companies Act over details of the incentive scheme, it had breached it in “spirit”, and added: “‘The spirit matters too. You’re all City figures.

The spirit matters as much as the letter. Being evasive and that kind of behaviour is not right.”

Johnson insisted that there was “no intention to cover [up] anything” and that Motability Operations had acted in line with best practice, but that it recognised that “there could be more openness” and had now taken steps to ensure that happened.

Asked about the level of reserves, Johnson said: “This is not a leasing company like any other leasing company.

If another leasing company has insufficient reserves and goes to the wall then its customers can go somewhere else. Our customers can’t. That’s why we need to have sufficient reserves in place.”

But Field said the government and MPs would never allow it to fail.

*The Motability charity is one of Disability News Service’s subscribers

10 January 2019



Rudd has not delayed roll out of universal credit, DWP confirms

The roll out of the government’s much-criticised universal credit benefit system has not been delayed and will proceed as planned, the Department for Work and Pensions (DWP) has confirmed.

Reports at the weekend suggested that new work and pensions secretary Amber Rudd had decided on a significant overhaul and planned to delay the process of moving about three million claimants of existing “legacy” benefits, including hundreds of thousands of people on employment and support allowance (ESA), onto universal credit.

Some commentators and politicians subsequently praised Rudd for listening to critics of the new regime, which has been blamed for driving many claimants into poverty.

But DWP confirmed this week that the timetable had not changed, and that the “managed migration” of those on legacy benefits like ESA and income support onto universal credit would begin in July with a small pilot programme of about 10,000 claimants, as previously announced.

Next year, DWP will begin migrating the remaining three million of those on legacy benefits, with the aim of completing the roll out by the end of 2023.

All that has changed is that, instead of seeking parliamentary approval for regulations that would allow the entire managed migration process to be given the go-ahead, ministers will first ask MPs to approve only regulations covering the pilot scheme.

They will then come back to parliament at a later stage for approval of regulations covering the rest of the managed migration process.

A DWP spokesperson told Disability News Service this week: “There is no change to the roll out timetable.

We will begin migration this year with a maximum of 10,000 people to make sure the system is working well for claimants and to make any necessary adaptions as we go.

We are clear this will have no impact on our timelines for universal credit to be fully rolled out by 2023.”

Rudd told MPs this week during the first work and pensions questions of 2019 that she was still considering when to ask MPs to vote on the main migration of the three million claimants.

She also confirmed that there were already 1.4 million people on universal credit, with another 1.6 million expected to move on to it during the next 12 months as part of so-called “natural migration”, through new claims by people not already on legacy benefits and from those moved onto universal credit because of a change in their circumstances, such as moving to a new home.

She said she would take on board a suggestion from Labour MP Ruth George that DWP should publish a “conclusive list of all the reasons for people having a change of circumstances and being moved on to universal credit”.

DNS has been trying since last January, through freedom of information requests, to persuade DWP to release such a list, and other information about the universal credit reforms.

Later in work and pensions questions, the shadow minister for disabled people, Labour’s Marsha de Cordova, was scathing about DWP’s decision to launch a seventh review of disabled people who had been wrongly denied social security payments, as revealed by DNS last week.

She said it was “yet another example of the devastating impact of the chaotic shambles at the heart of the DWP”.

And she asked Sarah Newton, the minister for disabled people, if the latest review was “the result of institutional indifference to the suffering of disabled people” or simply “the result of a department in utter chaos”.

Newton told de Cordova that she would “not even dignify those comments by repeating the allegations”.

She said: “We are utterly determined to make sure we have a benefits system that is compassionate, fair and fit for purpose.

We are proceeding at pace to review the PIP claimant cases to make sure that people get all the benefits to which they are entitled.”

But Newton was also told, by fellow Tory MP Maria Caulfield, of a constituent with cystic fibrosis who has “lung function of less than 30 per cent” but has lost his entitlement to personal independence payment and now faces a 47-week wait for a tribunal to hear his appeal.

Newton told her: “Many more people are benefiting from PIP than they were under the legacy system, but one mistake is one too many and I will of course work with her.”

10 January 2019



Nine journeys in one day expose ‘sham’ of National Express ‘accessible’ coaches

A disabled campaigner who took nine journeys on the same day to check the accessibility of the services provided by the UK’s largest coach operator experienced signifcant problems on all but one of them.

Wheelchair-user Doug Paulley had booked assistance in advance for services between Leeds and Bradford provided by National Express.

But all but one of last week’s nine journeys threw up serious problems, with malfunctioning lifts, drivers who did not know how to deal with the equipment, or staff failing to clamp Paulley’s wheelchair in place correctly and safely.

He caught all the day’s journeys on video and edited them into a 20-minute package of the worst moments.

The first journey saw him stuck in mid-air on the lift that was loading him and his wheelchair into the coach, with staff making repeated attempts to make the equipment work, and the equipment malfunctioning again at the end of the trip.

There were problems with the seatbelt on the second journey, but the third journey was problem-free.

After this third trip, he began taking pictures of the way his chair was being clamped, and found that not once on the remaining journeys was he restrained safely and correctly.

The fourth trip again saw the lift jamming, while the driver on the fifth journey had to repeatedly enter and reverse out of the bay because the ramp would not open properly.

When the ramp finally opened, the lift jammed.

On the sixth journey, the wheelchair was not clamped correctly, and on the seventh a member of staff reported problems with the “ratchets” that attach the wheelchair to the floor of the coach.

The next coach driver had problems clamping the wheelchair to the coach, while Paulley’s final journey saw the coach parked so close to the railings that it was difficult for him to access the ramp, while his wheelchair was again not clamped safely.

Last year, an investigation by Paulley showed that National Express was ignoring access laws by refusing to allow wheelchair-users to travel on its services on the same day they bought tickets.

Any coaches that have been adapted to be compliant with Public Service Vehicle Accessibility Regulations – as all of National Express’s have – must provide a wheelchair space and make that space available to wheelchair-users.

All companies operating scheduled services must ensure they are accessible by 1 January 2020, so other companies have less than a year to meet the necessary standards.

This time, Paulley booked his coach tickets in advance, and managed to make nine trips between Leeds and Bradford in different coaches in one day.

And he says his experiment shows that even those companies, like National Express, that are already running “wheelchair-accessible” services are actually offering an “unusable” system.

This means wheelchair-users do not even try to use the service, he said, so the equipment is never used.

Paulley said: “So when somebody like me comes along and bucks the trend by having the audacity to dare to attempt to use this system which everybody else takes for granted, it all falls apart spectacularly.

The sham is exposed as being a tick-box exercise of going through the motions of meeting the legislation, but nobody actually checks that it works and it isn’t actually usable.

Which is utterly shameful.”

Alan Benson, chair of Transport for All (TfA), the user-led organisation that campaigns on accessible transport in London, said Paulley’s experiences were “very disturbing and upsetting for Doug” but not a surprise to TfA.

He said: “Watching this experience is enough to put any disabled people off travelling by coach. This is unacceptable.

Clearly the equipment doesn’t work as it should and significantly the staff training wasn’t up to scratch even though the operator provided more support than would usually be available.

With rising train fares coach travel is seen by many as a more affordable alternative but based on this experience disabled people will be seriously considering whether this is a realistic or sensible alternative for them.”

A National Express spokesperson refused to say if the company was concerned about what it had seen in Paulley’s video.

But she said in a statement: “We take our commitment to accessible travel very seriously and always endeavour to facilitate travel on our coaches for any passengers requiring assistance, which includes wheelchair users.  

Customer feedback is key to our continual learning and informing any business decisions regarding our policy and procedures.

We are in direct discussions with Mr Paulley to respond in detail regarding his travel with us on 30 December 2018.

10 January 2019



Disabled designer wins $500,000 to develop first intelligent manual wheelchair

A disabled entrepreneur and product designer is set to develop a revolutionary prototype of the world’s first “intelligent” manual wheelchair, after winning half a million dollars in funding through a global competition.

Andrew Slorance, whose start-up company Phoenix Instinct is based in Forres, Moray, in the north of Scotland, was this week announced as one of five finalists in the worldwide Mobility Unlimited Challenge (MUC).

Slorance hopes to produce something that has “never been done before”: an ultra-lightweight wheelchair that uses artificial intelligence to create an “intelligent” centre of gravity, providing a chair that is both stable and easy to self-propel.

The wheelchair will also have intelligent, electronic braking so the user will not need to grab the tyres to slow down on steep slopes.

Slorance told Disability News Service (DNS) this week: “I genuinely think it would be a revolution of the wheelchair.

It’s a huge responsibility to wheelchair-users because the wheelchair has stayed as it has been for the last five years with very little innovation.

The wheelchair companies themselves, it doesn’t look like they are going to do anything like this. They’re going to carry on dishing out the same stuff.

And here we have the chance to move the posts and show them and wheelchair-users the wheelchair can be a lot better.”

The problem with lightweight wheelchairs, he says, is that even if they are easy to lift, the amount of weight on the small front wheels can make them difficult to push because the centre of gravity is too far forward.

But if you move the centre of gravity – the axle position – further back it becomes “very tippy and prone to falling backwards”.

What he will do with his new wheelchair – known currently as the Phoenix AI – is to use artificial intelligence and sensors that allow the wheelchair to adjust its own centre of gravity according to what the wheelchair-user is doing.

So it will always be very light to push because all of the weight will be going through the back wheels,” he says, “but it will be smart enough to keep the wheelchair stable, so any time the wheelchair looks like it may be prone to falling backwards, the system will kick in and correct it so that can’t happen.”

This, says Slorance, has never been done before.

The centre of gravity is the number one cause of accidents for wheelchair-users, he says, while the problems linked to the need to make the chair stable make it harder to push, create a lot of vibrations through the front wheels, and cause muscle spasms and other discomfort.

The new chair will also have intelligent, electronic braking, so it will automatically slow down to a pre-programmed speed when on a slope.

Wheelchairs don’t have brakes,” he says. “They have parking brakes, so when you get in and out of a wheelchair you can keep it in one place, but when you’re going down a steep slope in rain you’ve just got your hands.

Imagine saying to a cyclist, ‘Here’s your new bike, it doesn’t have any brakes, just grab hold of the tyre if you want to slow down.’”

All five of the MUC finalists will receive $500,000 to develop prototypes of their designs, with one of them set to receive another $1,000,000 when the winner of the challenge is announced in Tokyo in September 2020.

The Toyota Mobility Foundation launched the $4 million global competition in 2017 in partnership with the UK charity Nesta’s Challenge Prize Centre, with the aim of improving the mobility and independence of millions of people with lower-limb paralysis.‏

Four of the finalists, including Slorance and Phoenix Instinct, have already benefited from $50,000 MUC grants to help them develop their ideas.

Now he and the other four finalists have 18 months to produce a prototype to show to the judges.

He says he and his team have a “massive task” ahead of them.

They have proved that they can electronically adjust the centre of gravity through censors, so when the user moves their body position around on the wheelchair the centre of gravity will adjust itself – in a similar way that the Segway device keeps itself upright – but they still need to create an ultra-light wheelchair that remains “super-duper light” even after the electronics have been added.

He believes that such a product would be a revolutionary development of the wheelchair.

Slorance believes that his team should be able to get their wheelchair to market within three years.

If they do, he believes that smart wheelchairs will be commonplace within five years, just as mobile phones, fridges, and cars are increasingly becoming smart through their use of artificial intelligence.

Soon, he says, “people will be driving in driverless cars, they will be taking them home, the car will be telling the oven to turn itself on, while the fridge is ordering some shopping, but the wheelchair, the thing the person most needs more than anything else in life, will be this standard product that existed 35 years ago.

He says: “I don’t think it will stay like that. I think that making smart chairs is the natural progression and I think we are the people to get the ball rolling on that.”

Innovation in the wheelchair market has been slow so far, he says, partly because it is a niche market, but also because the companies that design wheelchairs are mechanical engineers, they are not electronic or software engineers and so do not have the expensive expertise they need at hand.

He believes this could change, if smart wheelchairs become the norm, and the big electronics and automotive companies join the market, ratcheting up the speed of innovation.

It could be, he says, “a very exciting time for people like myself as an innovator but also as a wheelchair-user”.

Slorance himself already has a strong track record of innovation in wheelchair design, after conceiving and designing the Carbon Black wheelchair, which is made almost entirely from carbon fibre.

He has wanted to design wheelchairs almost from the moment be broke his back when he was 14 and was presented by an occupational therapist with an “horrific” NHS wheelchair, and thought to himself: “Wheelchairs have to be better than this.”

He built a career in television, editing video for Channel 4 News and Sky News, but gave it up to design the wheelchair that would become the Carbon Black, driven by this belief that “wheelchairs could be better” and the feeling that he was “creatively starved” in journalism where the news is “here today and gone tomorrow”.

It was not quite as big a leap as it sounds, he says, because wheelchair-users have to problem-solve every day, but there was still a “long learning journey” ahead of him, on carbon fibre manufacturing, entrepreneurship, and finding the right people in computer-aided design “who would actually create the design that was in my head”.

The Carbon Black wheelchair that resulted from this journey was critically-acclaimed and was even exhibited at the Design Museum in 2012 after coming runner-up to the Olympic torch in the Designs of the Year competition.

But after he was forced out of his own company by investors he had brought on board – a “very tough thing to go through”, he says – he had to start all over again, which he did by starting up a new firm.

The name of his new company – Phoenix Instinct, which sells ultra-manoeuvrable luggage that can be towed by wheelchairs, which he designed himself after launching a Kickstarter fundraising campaign – has a double-meaning.

He says: “Every wheelchair-user customer that we have at the moment has Phoenix Instinct – they have the ability to get up every day and overcome the adversity that’s tried so hard to beat them.

But also for me, I have Phoenix Instinct as an entrepreneur, regardless of what happened to me at Carbon Black. Carbon Black is just part of my story.”

The other four MUC finalists – two from the US, one from Japan and one from Italy, whittled down from 80 entries spanning 28 countries – will also each benefit from $500,000 development funding over the next 18 months.

The Evowalk is ‏a smart, wearable leg sleeve that would help people with partial lower limb paralysis regain their mobility; the Moby is an integrated network of wheel-on electric devices that would allow users of manual wheelchairs the benefits of a powered chair through the equivalent of a cycle share scheme; the Qolo is a lightweight, mobile exoskeleton on wheels, which would allow users to sit or stand; and the Quix is a robotic, powered exoskeleton with motors at the hips, knees and ankles, which aims to offer someone with lower-limb paralysis “fast, stable, and agile upright mobility”. ‏

Ryan Klem‏, director of programs for Toyota Mobility Foundation, said: “These five finalists have shown real innovation driven by human-centered design.

We think that the technology incorporated in these devices could change the lives of a huge number of people around the world, not just for people with lower-limb paralysis, but also those with a wider range of mobility needs.”

Charlotte Macken, of Nesta’s Challenge Prize Centre, said: “Current personal mobility devices are often unable to fully meet the needs of users due to limitations affecting functionality and usability.

Historically, the pace of innovation is slow, due to small and fragmented markets and difficulties in getting new technology funded by health-care systems and insurers.

This can make the field unattractive to the very people who could help change the world.

We hope that challenges like this can inspire innovation and are excited to see how the five finalists use this opportunity to develop their ideas further.”‏

Meanwhile, Slorance says he can see a time when smart wheelchairs are all part of a connected network and are able to communicate with each other.

This could mean, if he wanted to travel from Covent Garden to Hyde Park in London, that his wheelchair would be able to ask other wheelchairs in the network how it could do this in an accessible way, whether there were any slopes on the route, and what the road surface was like.

My chair will be able to network with other wheelchairs that have done that journey,” he says, “and tell me exactly where I need to go, and what accessible places there are en route.

I think there’s a whole new world that can open up with the smart technology in wheelchairs.”

He says this could eventually see wheelchair-users with an advantage over non-wheelchair-users, something that has already happened in athletics with competitors with running blades, where, he says, “someone with carbon fibre legs can actually have an advantage over someone running on natural legs”.

A couple of years ago, he was in his wheelchair on an Edinburgh street and his front wheel caught a paving slab that was sticking up.

I fell flat on my face,” says Slorance. “I scarred my nose quite badly, I broke it. There was nothing I could do.

I think as we move forward, we will see intelligent systems implemented in wheelchairs that would have detected that paving slab sticking up and would automatically turn the chair a different way or sounded some sort of alarm long before I would have known it was there.

In that sense, unless you’re going to wear shoes that have sensors that tell you there’s a paving slab sticking up, then, yes, maybe the wheelchair-user might be at an advantage.”

10 January 2019



Company praised for ‘first accessible parking bay for charging electric vehicles’

Campaigners have welcomed the decision to install what is believed to be the country’s first accessible parking bay for disabled people who need to recharge their electric vehicles.

Only holders of blue parking badges who also need to recharge their electric vehicles will be allowed to use the space in the new NCP car park in Stanley Street, Salford.

The idea came following a suggestion from disabled campaigner Helen Dolphin, and Libbie Bilyard, co-founders of the People’s Parking scheme.

Dolphin, an independent mobility consultant and herself a disabled driver, came up with the idea when looking at how to make improvements to their car park accreditation scheme, which already judges services on their provision of electric charging points.

She said: “I am only too aware of the increasing growth of electric vehicles and although I don’t have an electric vehicle myself, I knew that as a disabled person I would struggle to get out of my car in a standard sized bay.

I therefore wanted to encourage car park operators to consider the needs of electric vehicle owners who are disabled and I’m absolutely delighted that NCP have installed a dual bay in their new car park.”

The scheme aims to improve car parks by highlighting those with facilities for disabled people, parents, commuters, cyclists and motorcyclists, and for electric and wheelchair-accessible vehicles, and those that can show they have good signage and pedestrian routes, are well-lit, clean and well-managed. 

Sean Fenney, NCP’s head of operations for Manchester, said: “Normally we have to work within the limitations of the estate that we currently have, so when we have a new-build car park it’s always a great opportunity to be able to make the space really work for all our customers.

We were really pleased to be able to add our first dual electric charging bay for our disabled customers, as we expect that to be a very real need in the near future.”

The Department for Transport (DfT) welcomed the move by NCP.

A DfT spokesperson said: “We welcome measures that support the use of electric vehicles and are committed to ensuring that everyone in our society enjoys the same opportunities to travel.

Our Road to Zero strategy, combined with £1.5 billion of investment in ultra-low emission vehicles, sets out a clear path for Britain to be a world leader in the zero emission revolution.”

Motability currently offers three electric models to lease through the disabled people’s vehicle scheme, with 202 customers with electric vehicles at the end of December.

A Motability spokesperson said: “The Motability scheme is currently in discussions with a number of other manufacturers to be able to supply full battery electric vehicles on the scheme in the future.

Motability supports initiatives, such as People’s Parking, in helping to improve facilities for disabled people.”

10 January 2019


News provided by John Pring at www.disabilitynewsservice.com

 Posted by at 14:31
Jan 082019

Reclaiming Our Futures Alliance logo

Independent Living for the Future


So long as we live under a system that puts profit before people, we will need to struggle to secure the resources required to support Disabled people to access the same rights and opportunities as non-Disabled people. That struggle will take different forms at different times depending upon the attacks we find ourselves facing and the reforms we consider most urgently needed under particular circumstances. Throughout, it is important that we do not lose sight of the bigger picture that we are fighting for, of a society where each person is valued for their diverse, personal worth rather than their ability to labour and produce profit, and where each person is able to truly fulfil their diverse, personal potential.

As desperate as times currently are, we are sadly a long way off from achieving a society founded upon principles of fairness and social justice. Nevertheless, the demands that we make and the reforms we lobby for must be consistent with that wider vision. The way that the personalisation agenda, sold to local authorities on the basis that it would produce cost savings and tied to the marketisation of social care, has effectively undermined Disabled people’s rights and freedoms is a prime example of the dangers of focusing on reforms in isolation from wider social principles. It is therefore important that Disabled campaigners continuously review our vision and our demands.

Grassroots campaigning by Deaf and Disabled people since 2010 has been focused heavily on social rights, especially on to the right to independent living and being included in the community as set out in Article 19 of the UN Convention on the Rights of Disabled People (UNCRPD).

Article 19 – Living independently and being included in the community

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

This is for a number of reasons:

  • Measures imposed through ‘austerity’ and devastating cuts in social care are having serious adverse impacts that directly affect Disabled people’s rights and freedoms in exactly those areas set out in Article 19. Instead of closing Assessment and Treatment Units and moving people with learning difficulties and autism back to their communities, it has become more common for Disabled people to be sent many miles from their homes, families and friends due to a chronic lack of local provision. People with mental health diagnoses may also be sent a long way away for treatment. Local authorities and Clinical Commissioning Groups are introducing maximum expenditure policies which threaten to force Disabled people into residential care against their wishes. The General Comment on Article 19 published by the UN disability committee in 2017 made clear that institutionalisation of Disabled people can also occur in people’s own homes, when their basic needs are neglected and they are denied the support they need to leave the house and participate in the community. The rights to independent living and being included in the community set out in Article 19 provide a clear guide to the rights that Disabled people should be able to enjoy and a measurement framework for progression.


  • Austerity measures are disproportionately affecting Disabled people’s right to an adequate standard of living as set out in the UNCRPD. New assessment processes such as the WCA and PIP arbitrarily divide disabled people into the “genuine” and the “undeserving”. These assessments are informed not by Disabled people’s lived experience of impairment, but by insurance companies aiming to limit claims. The huge reduction in financial support available to many disabled people under ESA and PIP reform, combined with delays and failures in the assessment process has resulted in increased poverty and a well-documented deterioration in our wellbeing and quality of life. A number of benefit claimants are being forced to cut down on food and heating, use food banks and borrow money that they are ill-equipped to return, which is traumatising and, in some cases, has resulted in suicide. Current measures seem to have links with a neoliberal approach within which people who are regarded as wealthy, or ‘hard working’ are perceived as worthy in contrast to people with support needs who are viewed as second class citizens.


  • There are some acute intersectional issues. Disabled people who have more than one ‘protected characteristic’ under the Equality Act 2010, who experience additional inequalities not covered by the Act (related to socio-economic class, or homelessness, for instance), or have dual diagnoses (including substance addictions) are especially disadvantaged in relation to independent living.


  • There are particular issues for Disabled People who are made subject to the Mental Health Act 1983, with people from BME communities often affected particularly badly, and people deemed to lack capacity under the Mental Capacity Act. Some groups of BME service users are particularly likely to experience the controlling rather than supportive aspects of the psychiatric system. The MH Act authorises detention and compulsory treatment for people diagnosed with a (serious) mental disorder when they/others are thought to need protection. This authorisation removes their right under Article 19 to live in the community, choose their place of residence and exercise choices on an equal level with others. Detention and compulsory treatment, whether exercised through an inpatient setting, or a Community Treatment Order, also run contrary both to Article 12 and to Article 14 of the Convention. Thus the UNCRPD Committee has recommended an end both to substitute decision-making and to ‘compulsory treatment and detention of persons with disabilities on the basis of actual, or perceived impairment’. In both hospital and other settings, the UNCRPD guidance also includes an end to the use of physical and chemical restraint. People who are neurodivergent and people with life limiting chronic illness are also subject to detrimental impacts caused by inappropriate referrals to and interventions used on them within the mental health system.


  • The language of independent living has been appropriated by Government and public bodies to justify the cuts they are making. Policy documents at national, regional and local government levels repeatedly refer to “helping people to stay independent for as long as possible”, often while simultaneously claiming to be in accordance with Article 19 and yet demonstrating a clear failure to comprehend a concept of independent living based on Disabled people’s right to exercise choice and control over our everyday lives and to access the same chances in life as non-Disabled people on an equal footing. It is common practice for essential support to be removed from Disabled people through social care assessments under the justification of “helping” them to “improve their independence”. Article 19 rights have thus been co-opted and subverted in order to facilitate the retrogression of Disabled people’s rights.


  • The UNCRPD is a tool that Disabled people have used to draw attention to the suffering and distress directly caused by government legislative and policy measures where we have felt listened to and our experiences validated. That gives it an immediate relevance to Disabled people’s day-to-day lives.


  • Disabled campaigners are proud of the independent living movement and all that it achieved. At a time when discrimination continues to exist legally, structurally and within many parts of society, daily living conditions are deteriorating and the odds against us seem overwhelming, it is enormously important to be able to draw on a source of pride that sits at the core of our shared identity. It keeps us going, reminding us how powerful we can be and what we can achieve when we collectivise and are determined. The right to independent living as set out in Article 19 gives us a clear and relatively uncontroversial goal to focus on.

There has been recent debate about whether it is useful to still use the language of independent living. We would argue that it is. With certain audiences we are seeking to influence it may be expedient to tailor language in order to be better understood and to convey our messages more effectively, for example referring to cuts to “social care” rather than “independent living support services”. Those are decisions that can be made according to particular circumstances. However, to stop talking about independent living and to shift our focus away from achieving a right to independent living would be a strategic mistake. It would rob Disabled people of one of the few things we have left to hold on to.

If new campaigners come into the movement who are only aware of the appropriation of the language of independent living rather than the proud history of the independent living movement, then it is our job to share our history and learning. We must also remember that the politics of the independent living movement, based as it is on collectivisation and grassroots struggle, will not appeal to all. There is a view that it is better to find a ‘middle way’, acceptable to the status quo than to fight for the fundamental reshaping of society, that is held for a multitude of reasons, some due to internalised oppression and others not, ranging from an absence of hope that real change is possible to a vested interest in maintaining the current system. Where those political differences exist, there will be times when we find common goals on which we can campaign together in the pursuit of reforms to mitigate and alleviate the worst harms, but we must understand them as differences and reflect on our own position within the context of our wider principles and values.

Below we set out our demands for a national independent living service capable of upholding Disabled people’s Article 19 rights and what will need to be in place to achieve it. It has been shaped and developed through ongoing debate and discussion within the Independent Living Campaign, set up in 2011, in response to the then planned closure of the Independent Living Fund (ILF) and most recently through:

  • The independent living workshop at the National Deaf and Disabled People’s Summit organised by the TUC Disabled Workers Committee and the Reclaiming Our Futures Alliance in November 2017.
  • The 2017 National Independent Living Campaign Conference funded by Disabled People Against Cuts (DPAC) and co-organised with the Reclaiming Our Future Alliance.
  • A Reclaiming Our Futures Alliance independent living round table held in May 2018 and follow up email discussions.

Disabled People’s Vision of Independent Living Support for the Future


The social care and mental health systems are in crisis and as a result Disabled people’s rights to an adequate standard of living, to inclusion and equal participation in society are being taken dramatically backwards. Rising levels of charging are increasingly pushing Disabled people out of receiving social care altogether and leading to a growing problem of debt and arrears1. The joint report of the Health and Social Care and Housing, Communities and Local Government Committees on the long-term funding of adult social care says:

The combination of rising demand and costs in the face of reductions in funding has placed the social care system under unsustainable strain. In its present state, the system is not fit to respond to current needs, let alone predicted future needs as a result of demographic trends.”

Besides urging that research be undertaken into actual and future levels of need and for corresponding investment, Disabled people have long called for the radical overhaul of both the social care and mental health systems in order to better fit a human rights approach to disability. At present, Disabled people’s experiences of independent living and being included in the community differ considerably depending upon impairment, for example people with learning difficulties, people who are neuro-divergent and people with energy-limiting chronic illness (especially medically contested diagnoses like Myalgic Encephalomyelitis 2) are less likely to be found to have eligible needs under the social care system while people living with mental distress are largely confined to a separate system without access to the same sorts of support. Instead, we are arguing for a system underpinned by the social models of disability and distress that can be accessed by all Disabled people regardless of impairment or perceived impairment. Our vision for a national independent living support system would also eliminate the post code lottery that exists within current local authority and CCG administered provision. We believe that all independent living support should be free at the point of need and as the example of free personal care in Scotland has shown this could lead to savings in other areas such as the NHS budget3. By building on what was most successful about the Independent Living Fund which had considerably lower overheads than local authority administered support4, it could also be more cost effective than the current system.Terminology

Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. (See Appendix A).

Priority Demands

  1. Set up an independent living taskforce led by Disabled people to develop proposals for a national independent living support service.
  2. Explore in co-production with Disabled people the strongest legal frameworks for legislating for Article 19 rights, including enshrining the CRPD in domestic legislation and developing an independent living bill of rights.
  3. Make a case for investment in independent living support, including evidencing social care as a social and economic generator5 and what wider benefits could be saved from savings to NHS budgets.Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 19.
  4. Educate the public and promote the benefits of investing in support for Disabled people.


That the right to independent living as outlined in Article 19 of the United Nations Convention on the Rights of Persons with Disabilities becomes reality:

All Disabled people to have equal rights to live in the community, with choices equal to others, and be fully included and able to participate in the community, through:

  • the opportunity to choose their place of residence and where and with whom they live on an equal basis with others, without being obliged to live in a particular living arrangement;
  • access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
  • community services and facilities, for the general population are available on an equal basis to Disabled people and are responsive to their needs.”

Underlying principles

  • Social and human rights-based models of disability and distress
  • The twelve pillars of independent living
  • The National Survivor User Network’s Manifesto
  • Article 19 of the United Nations Convention on the Rights of Persons with Disabilities
  • The UNCRPD Committee’s General Comment No 5 on Article 19

Core demand

A new universal right to independent living, enshrined in law and delivered through a new national independent living service co-created between government and Disabled people, funded through general taxation, managed by central government, led by Disabled people, and delivered locally in co-production with Disabled people.

Universal right to independent living

The UN CRPD is not enshrined in UK law and recent case law has weakened its application in interpreting domestic legislation; for example, the judgment in Davey vs Oxfordshire states that “great care must be taken in deploying provisions of a convention or treaty which set out broad and basic principles as determinative tools for the interpretation of a concrete measure such as a particular provision of a UK statute. Provisions which are aspirational cannot qualify the clear language of primary legislation.”6 The inadequacy of the Care Act 2014 to uphold the rights of Disabled people has been proven in practice. Disabled people’s concerns that the “well-being duty” implemented through the Care Act would offer insufficient protection against retrogression of our rights were ignored multiple times in the development of the legislation. Our petitioning for a right to independent living as outlined by Article 19 of the UN CRPD to be placed on the statute through the Care Act was dismissed and although the statutory guidance refers to Article 19 (para 1.19), this does not have the legal weight needed to be effective. In addition, it has not been co-ordinated well with provision for mental health service users such as the Care Programme Approach.

We call for new free-standing legislation to implement an independent living bill of rights, drawn up in consultation with organisations of Disabled People and enshrining their recommendations. This legislation would be in accordance with the UNCRPD Committee’s General Comment on Article 19, including its call to end detention, substitute decision making and compulsory treatment and to put a focus on intersectional issues too. The legislation would also cover rights to support which enable Disabled people to access the same life chances as non-Disabled people in all areas covered by the twelve pillars of independent living.

Disabled people’s rights under the new legislation will need to be communicated in accessible ways, with an appeals process, legal aid, legal status and legal support made available for Disabled people who consider their rights to have been breached.

This legislation should apply to all Disabled people who are resident in the UK, regardless of citizenship or asylum status.

National independent living service

The social care element of Disabled people’s right to independent living will be administered through a new national independent living service managed by central government, but delivered locally in co-production with Disabled people. It will be provided on the basis of need, not profit, and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation.

It will build on and learn from the success of the Independent Living Fund, closed by the coalition government in 2015, and the failures of the local authority care and support system. It will also learn from the experiences of user-led Disabled people’s organisations (DPOs), including those run by people experiencing intersectional discrimination and disadvantages, user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-Disabled allies who share the critique of the existing system and who work to the social models of disability and distress.

The national independent living service will be responsible for carrying out assessments and reviews and administering payments to individual Disabled people. Individuals will not be obliged to manage their support payments themselves if they choose not to. Alongside establishment of the national independent living service will be investment in local service provision so that within each area Disabled people will be able to choose from a range of peer support options delivered by user-led Disabled people’s organisations and co-operatives wherever they live. These services will support them to exercise choice and control over the support they receive and to manage their financial, administrative and employment responsibilities including legal duties as employers. Local Disabled people will be meaningfully involved in investment and commissioning decisions, as well as in researching and monitoring how well provision is meeting need. Disabled people who are involved in these processes will also be demographically representative.

The national independent living service will be located in a cross-government body which can ensure awareness of and take responsibility for implementation plans in all areas covered by the UNCRPD’s General Comment on Article 19 and by the twelve pillars of independent living, whether it be in transport, education, employment, housing, or social security. The cross-government body will also be responsible for ensuring that intersectional issues are adequately addressed. Rather than being ghettoised in the DWP as the Office for Disability Issues is at the moment, this will ensure that independent living is mainstreamed in every area of activity as an equalities issue rather than seen primarily as a work and benefits issue.

  • Co-created with Disabled people

The national independent living support service will be co-created with Disabled people through an independent living task force led by Disabled people who need/use independent living support.

  • Anti-discriminatory

The service will be designed to be anti-discriminatory, challenging current discriminations on the basis of age, ethnicity, sexuality, gender, class, culture, disability and distress. This will include diversity and inclusion at all levels including organisations of Disabled people and structures led by Disabled people involved in delivery of the service.7Funded through general taxation

Social care should not be funded through set precepts or levies as evidenced by the difficulties encountered in Australia with their National Disability Insurance Scheme8. Funding through general taxation allows greater flexibility to respond to changing levels of need. This could be done, as advocated by a number of recent reports,9 through “soft” hypothecation, for example a rise in National Insurance that the public understands is in order to adequately fund social care. There is much evidence that the public would be in favour of tax rises in order to fund the NHS and social care, however there is also evidence that the public vote for lower taxes and the creation of a specific levy earmarked for social care has the disadvantage of insufficient flexibility to match demographic changes. Pinpointing tax rises to cover specific areas can also be problematic in that it places the spotlight on particular groups. Funding for social care should as with the NHS be out of general taxation. Managed by central government

The national independent living support service will build on lessons learned from the Independent Living Fund in being independent of Local Authorities and CCGs. This will eliminate the current postcode lottery, which has increased since closure of the ILF10, and enable greater transparency and accountability to Disabled people.Led by Disabled people

The governance of the national independent living support service will ensure that Disabled people are involved and have a meaningful say at all levels of decision-making with a governing body that is made up of a majority of Disabled people. Structures will limit the involvement of non-user led charities and disability organisations.

  • Delivered locally

Alongside the establishment of a national independent living support service, there will be investment in the development of Disabled People’s Organisations delivering local services in response to need and ensuring that a range of options are available to support Disabled people to live in the community and exercise choice and control over the support they receive.

User-led organisations will be resourced to provide support that enables equal participation in society across all areas of Disabled people’s lives, including Access to Work11, housing12, social security and financial advice and wide-ranging service and resource provision.However, there must be monitoring mechanisms to ensure that local delivery does not deny the nationally uniform status of the entitlement to support, so that for example disabled people can move to different areas without any loss, or threat of disruption, of funding or support services.

Service provision will include a full range of alternatives to the “white western medical” model approach, psychiatric medication and clinical treatments which are prevalent in mental health services and to the re-defining of service user concepts such as recovery in clinical terms. There will, too, be a wide range of resources which are important to Disabled people who are currently disadvantaged by shortfalls in intersectional provision.

Features of a national independent living support system designed to uphold Disabled people’s rights

The national independent living support service will be co-created with Disabled people so its features will be decided by them. However, the features below reflect ideas that would address the current barriers experienced by adult social care service users.


In place of eligibility criteria, the service will provide support on the basis of meeting need where it exists so that all Disabled people experiencing issues that have a significant impact on their ability to live independently and be included in the community receive the self-identified support they need. Under the current system of eligibility criteria certain impairment groups are effectively excluded from social care support, for example people living with chronic illness and mental distress. Meeting wider needs saves money in the long-term by preventing crises and lessening the strain on acute services.

Assessments and support plans

Assessments should take the self-identified needs of the Disabled person as their starting point and self-assessments should be available to all who prefer this option.

Assessments should be proportionate, without compromising the dignity of the Disabled person or being overly intrusive, and to be designed and carried out with the aim of genuinely assessing need rather than looking for ways to make cuts.

Assessments should consider all areas of a person’s life including the ability to socialise and participate in the community on an equal footing with non-Disabled people, and to take part in education, volunteering and employment, and not focus solely on personal care. Equally, they should not be based upon the current approach that views employment as good for every Disabled person, regardless of the realities of their impairment and the disabling barriers they face.

Assessments and assessment reports should be respectful of the Disabled person concerned and of the Disabled person’s account of their impairment and their needs, even if this is not validated by or is at odds with medical report or diagnosis. There should be a clear distinction between assessments of need and support plans. Support plans should be based on the wishes of the Disabled person even when they disagree with the assessor’s recommendations. People should have the right to turn down services offered that they do not want or consider appropriate.

One-size fits all support packages such as reablement or intermediate care can be completely inappropriate, and indeed, harmful for people with energy-limiting chronic illness. Reablement should never be the default response to presenting care needs, nor a necessary gateway to accessing long -term support. Reablement services should only be offered if a Disabled person fully understands the concept and agrees that being supported to do more for themselves could increase function and wellbeing.

Support planning has to be genuinely co-productive. Disabled people should be supported to fully participate in this process.

Disabled people’s wishes and views on how their needs can best be met should not be over-ruled by a desire to cut costs, for example replacing support with technology or aids and adaptations in circumstances where they would reduce the Disabled person’s quality of life.

Assessments for the new national independent living service will be delivered by employees of the service itself and will not be outsourced.

Support package awards

Flexibility should be given in how payments for support can be spent, with no blanket restrictions (such as not providing night support; not funding costs for Personal Assistants accompanying Disabled people on activities; not allowing buildup of contingency funds). Disabled people’s support packages must pay enough for:

Disabled people’s support packages must cover all costs associated with managing the package and pay enough for:

  • Hourly Personal Assistant rates that reflect the skills and experience needed for the role and are in line with NHS pay scales and increase in line with inflation.
  • Pension contributions and sick pay scheme.
  • Compliance with the National Minimum Wage.
  • Increase in line with inflation.
  • Paid training opportunities for Personal Assistants and training for Disabled people in managing Direct Payments and managing staff.
  • Support from local services with supervisions, management and conflict resolution.
  • Contingency funding for periods of temporary greater need (e.g. when recovering from an operation or short-term health problem) and for temporary cover for absence of PAs due to illness or other emergencies or for if PAs resign/have to be dismissed and replacement PAs cannot be recruited immediately.

There will be no caps on how much support can be funded to support an individual to live and participate in the community.

Disabled people will not be charged for, or have to make any financial contribution towards, the support they receive through the national independent living support service.


Disabled people will have the choice to act as individual employers or to appoint local services to act as legal employers for the Personal Assistants they recruit and supervise and be responsible for administration and payroll. The costs of using administrative and payroll services of an adequate standard and quality will be covered in the independent living support awards that Disabled people receive.

Payment Cards should not be presented as the only or default option for spending support package funds as this limits choice and control while diverting substantial funds to the companies running the card services. 13


Investment in local user-led services, including those led by people experiencing intersectional discrimination, responding to local need and the provision of services are informed by the views of local Disabled people from all demographic backgrounds will ensure that a range of support options are available.

This will include:

  • Peer Support Forums14, training, information and support for Disabled people using the independent living support service.
  • Direct Payment management, employment support and payroll services.
  • Independent advocacy.
  • Social security and financial advice.
  • A range of therapeutic provisions, including a wide variety of non-medical alternatives and culturally appropriate options.
  • Independent living aids, adaptations and assistive technology.


Monitoring must be proportionate, and be closer to the monitoring systems that were employed by the ILF than the burdensome and intrusive monitoring mechanisms used by local authorities. The National Independent Living Support Service must also be efficient and timely in its processing of monitoring information, again by contrast to common practice within local authorities.


Reviews should take place not more frequently than once every 3 years unless circumstances change and unless requested by the Disabled person. Disabled people should not be burdened with being repeatedly forced to re-tell and explain how disability impacts on their lives; nor continuously repeat their independent living needs. This would allow the service user to forward plan their lives and the service provider is not snowed under with case work.

Where possible assessors should hold client lists, this allows for continuity, for both parties. Where a disabled person requests a review, say for a change in circumstances, there need to be easy to access mechanisms in place. Reviews, where practicable, should be carried out by the original assessor.

Appeals system

There must be a transparent and accessible complaints and appeals system for Disabled people who are dissatisfied with the service they receive or decisions made by the National Independent Living Support Service. This must also be a system which Disabled people find satisfactory in resolving concerns that they have raised.


Once assessed and an independent living package is put in place, this package should be portable. If a disabled person wishes to move, for personal, health or employment reasons, and if their support needs have not altered, then they should not be forced to go through the assessment process again.

Steps to achieving our vision

  • Office for Disability Issues to be placed within either the Cabinet Office or the Government Equalities Office to give it more reach across different Government departments.


  • Formation of an independent living taskforce with a meaningful influence, led by Disabled people from all demographic backgrounds who need/use independent living support.


  • Funding to make a case for investment in independent living support, including evidencing social care as a social and economic generator and what wider benefits could be saved from savings to NHS budgets.


  • Model the amount of funding needed to ensure good quality independent living support meeting need now and in the future to uphold all Disabled people’s rights under Article 1915.


  • Funding of user-led research into alternative service options and culturally appropriate resources for Disabled people.


  • A communications strategy for raising awareness about what we mean by independent living, Disabled people’s human rights and the role of Personal Assistants.


  • Dealing effectively with stigma against Disabled people whether at political, commissioning, or service levels, or within society as a whole.


  • The funding of adequate training for government personnel, commissioners and service providers about the meaning of independent living and its value, led by Disabled people


  • A strategy for investment in local user-led provision alongside closure of institutionalised, segregated settings including long stay hospitals and Assessment and Treatment Units.


  • Fund work to draw up a case for investment in Access to Work, evidencing the level of return on investment to the treasury for every pound spent on AtW.


  • A review of Access to Work with a view to:
    • Overhauling the scheme to make it fit for purpose, significantly reduce administrative and financial errors, address lack of training and hostile attitudes from AtW advisors towards customers, and replace the current mentality of gatekeeping with a concern to adequately support Disabled people,
    • Identifying current problems experienced by existing and prospective customers and ways to make improvements
    • Ensuring provision of a supportive and effective service for Disabled customers
    • Expansion of the scheme to support volunteering and work experience
    • Improved scope for Disabled people who cannot work regularly to undertake small and occasional pieces of paid employment without their benefits being at risk.
    • Rolling it into the new national independent living support service.


Legislative and treaty change

  • Legislate for a free-standing right to independent living that includes an adequately resourced right to inclusive education.16
  • Implement the appeals process under the Care Act 2014.
  • Bring into force Section 1 of the Equality Act 2010 to introduce a socio-economic duty on public sector bodies and dual discrimination provisions.
  • Reverse the changes to legal aid that have restricted eligibility for Disabled people.
  • Remove UK reservations and interpretative declaration on Articles 24 of the United Nations Convention on the Rights of Persons with Disabilities17.
  • Amend the Mental Capacity Act 2005 to give full human rights to Disabled people and their families and to ensure that ‘best interest’ decisions made reflect the will and preferences of Disabled people and introduce an accessible system for people to challenge decisions made about them.
  • Bring detention, substitute decision-making and compulsory treatment to an end for all Disabled people.



Appendix A

Under the term “Disabled people” we refer to anyone who is disabled by society according to the social model of disability. This includes:

  • People physical, mobility or sensory impairments
  • People who are Deaf
  • People with learning difficulties/disabilities
  • People living with mental distress
  • People are neuro-divergent
  • People living with chronic illness and long-term health conditions.

We recognise that not everyone within these groups identifies as Disabled and respect that not everyone with these experiences considers themselves to have an impairment. There is certainly need for wider discussion and debate on these issues, however for this paper we have taken the position that what unites us all are the disabling barriers and experiences of oppression that we face and we therefore use the term “Disabled people” to refer to all of us.

For more information on the social model of disability and cultural model of Deafness see: https://www.inclusionlondon.org.uk/disability-in-london/social-model/the-social-model-of-disability-and-the-cultural-model-of-deafness/

Appendix B

The 12 Pillars of Independent Living

Theses are:

Appropriate and accessible information

An adequate income

Appropriate and accessible health and social care provision

A fully accessible transport system

Full access to the environment

Adequate provision of technical aids and equipment

Availability of accessible and adapted housing

Adequate provision of personal assistance

Availability of inclusive education and training

Equal opportunities for employment

Availability of independent advocacy and self-advocacy

Availability of peer counselling

The twelve pillars were developed by Hampshire Coalition of Disabled People building on seven action points, originally devised by the Derbyshire Coalition of Disabled People, which identified the barriers to independent living and how they can be removed:


Disabled people require information on what is available to assist with independent living.

Peer Support

Disabled people need the support of other disabled people to discuss how to make best use of the information obtained and for ongoing support.


Disabled People need accessible housing. This may be in terms of wheelchair access or in terms of support and advice in relation to having one’s own accommodation.


Many disabled people need particular types of practical equipment to assist them in living independently.

Personal Assistants

This is the one to one support that some disabled people need to live in their own home and be part of the community.


This may mean improved public transport in terms of physical access, information about the routes, more assistance for passengers who are unsure about using public transport, and improved routes to take into account the issues for disabled people. It may mean access to personal transport such as the use of cars or support to use other forms of transport.


The most obvious examples concern physical access such as dropped kerbs, level entrances to buildings and provision of accessible public toilets. However, access goes much further than this. There are barriers created by systems, practices and attitudes which prevent disabled people from participating, for example, excluding people with mental health needs from public meetings.

Appendix C

European Network for Independent Living (ENIL) Principles

1. Independent living is a process of consciousness raising, empowerment and emancipation. This process enables all disabled people to achieve equal opportunities, rights and full participation in all aspects of society.

2. Disabled people must be able to control this process individually and collectively. To achieve this goal, we provide peer support and use democratic principles in our work.

3. As equal citizens we must have the same access to the basics of life including: food, clothing, shelter, health care, assistive devices, personal support services, education, employment, information, communication, transportation and access to the physical and cultural environment, the right to sexuality and the right to marry, to have children, and peace.

4. The Independent Living Movement must be a cross disability movement addressing the needs of all disabled persons. In order for this to occur we must rid ourselves of any prejudice we have towards disabled people other than our own and encourage the involvement of disabled women and other under-represented groups. Disabled children should be enabled by their families and society in general to become independent adults.

5. Disabled people must obtain all the requirements for equalisation of opportunities and full participation by defining their own needs, choices and degree of user control.

6. The Independent Living Movement is opposed to the development and maintenance of systems which promote dependency through institutional responses.

7. Disabled people must involve themselves in research and development, planning and decision making at all levels, in matters concerning their lives.


Appendix D

The National Survivor User Network’s Manifesto

Our Voice Our Vision Our Values

We aim to:

1. Address the injustice and harm that have been caused by cuts to public funding and changes to the benefits system

2. Make the policy of ‘getting the right support, at the right time, in the right place, from the right person’ a reality

3. Pressure mental health services to make the principle of ‘nothing about us without us’ a reality at all levels, through meaningful involvement in decisions about our own individual care and genuine co-production to develop services

4. Work together with people from socially deprived and marginalised communities to determine their support and develop alternatives

5. Challenge institutionalised discrimination and put equality back on the agenda for mainstream mental health services

6. Call for a reform of the Mental Health Act 2007 to make it fully compliant with human rights and ensure that people are not harmed or abused

7. Reflect the social model of disability and promote informed choice and alternatives to medication 8. Reclaim, challenge and revive survivor knowledge and research

8. Reclaim, challenge and revive survivor knowledge and research.

To see the full manifesto go to: www.nsun.org.uk/our-manifesto

Appendix E

Inclusion London Briefing on the UNCRPD’s General Comment no 5 on Article 19: Living independently and being included in the community

To read the full text of the General Comment go to: https://www.ohchr.org/en/hrbodies/crpd/pages/gc.aspx

In August 2017 the UN disability committee published a “general comment” on Article 19. General comments provide an interpretation of the provisions of a treaty. In this case the treaty is the Convention on the Rights of Persons with Disabilities (UNCRPD).

The following points made within the General Comment are useful to note for campaigning within the context of the current situation facing Disabled people in the UK and the right to independent living

  • Investing in independent living is cost effective because it reduces poverty and therefore the dependency of Disabled people. Para. 5

  • There are NO exceptions to whom the right to independent living applies

  • Emphasis of the importance of addressing intersectional issues. – Para. 15

  • The General Comment criticizes “Inappropriate decentralization, resulting in disparities between local authorities”. – Para. 15(k)

  • Independent living should not be interpreted solely as “the ability of carrying out daily activities by oneself”. – Para. 16(a)

  • Article 19 recognises the importance of a “full social life” within the right to independent living including all “spheres of social life” such as cultural, political and leisure activities and “shopping”. – Para. 16(b)

  • Institutionalisation is not limited to people being kept in long stay institutions but includes where Disabled people are confined in their own homes, isolated and effectively segregated, unable to access the community due to lack of funding in personalised support options. – Para. 16(c)

  • The obligatory sharing of personal assistants is mentioned a number of times as contrary to the right to independent living. – Para. 16(c)

  • Funding for personal employment must take into account “human rights standards for decent employment”. – Para. 16(d)(i)

  • Where a State party introduces measures which regress Article 19 rights in response to economic or financial crisis the State Party is “obliged to demonstrate that such measures are temporary, necessary and non-discriminatory”. – Para. 43

  • State parties must ensure that private institutions are not established in the guise of “community living.”” – Para. 51

  • The availability of accessible and affordable housing is crucial for de-institutionalisation. – Para. 53

  • It is against Article 19 to exclude Disabled people who require higher levels of support and have more complex needs. – Para. 60

  • All personnel working in relevant areas including “civil servants monitoring services” need to be adequately trained on independent living, both training and practice. – Para. 65

  • An end must be brought to substitute decision-making and involuntary institutionalization. – Para. 83

  • There must be mechanisms to allow Disabled people to appeal against decisions concerning independent living and “substantial” rights to legal aid must be in place. – Para. 82

  • Independent living in inherently linked to inclusive education. Para. 89


 An investigation by GMB union has revealed at least 166,000 people are trapped in debt for their social care. http://www.gmb.org.uk/newsroom/social-care-debt


 Action for ME (2015) Close to collapse: an interim report on access to social care and advocacy for people with ME/CFS


 Both the Joint Committee report and the recently published Lord Darzi Review into Health and Social Care recommend the introduction of free personal care.

4 According to the final annual report and accounts of the ILF from end of March 2015, the Fund had a 98% service user satisfaction rate and just 2% of the budget was spent on administration.


 Beresford, P. (2016), All Our Welfare: Towards participatory social policy, Bristol, Policy Press.


 Davey, R (on the application of) v Oxfordshire County Council & Ors [2017] EWCA Civ 1308 (01 September 2017) Paragraph 62.



 Building on work developed by Shaping Our Lives looking at overcoming barriers to more inclusive user involvement : http://www.invo.org.uk/beyond-the-usual-suspects-towards-inclusive-user-involvement/


 The NDIS was financed by an increase in the Medicare levy in June 2014 from 1.5 per cent to 2.0 per cent of taxable income. This has proved to provide be insufficient funding, and there are now concerns of a lack of public will for an increase.

9 Long-term funding of adult social care – First Joint Report of the Health and Social Care and Housing, Communities and Local Government Committees of Session 2017–19


Citizens’ Assembly on Social Care: recommendations for funding adult social care


The Lives we want to Lead: the LGA green paper for adult social care and wellbeing – July 2018


The Lord Darzi Review of Health and Care Final Report: BETTER HEALTH AND CARE FOR ALL A 10-POINT PLAN FOR THE 2020s, Institute for Public Policy Research; Lord Darzi June 2018



 See Inclusion London’s report “One Year On: Evaluating the Closure of the Independent Living Fund”



 So long as Access to Work remains separate – we favour these being rolled into the new independent living service.

12 We also favour Disabled Facilities Grants being eventually rolled into the new independent living service.


 A report from the Independent Living Strategy Group found that over a million pounds a year is spent on fees and costs to operate the cards and that an estimated £1.5 million has been spent by 71 local authorities introducing the schemes.


 These should focus on building peer support communities and not take the form of professionalised one to one peer support.


 Both the Joint Committee report on the long-term funding of adult social care and Lord Darzi’s review of Health and Social Care recommend a need for data modelling.


 The UN Disability Committee’s General Comment No. 5 on the Right to Independent Living and Being Included in the Community made clear that inclusive education is an integral part of Disabled people’s rights under Article 19. The UK government continues to have a reservation on Article 24 and maintains its position of offering segregated education as a “choice”.


 Article 24 is the right to inclusive education.

 Posted by at 22:27
Jan 032019

Ministerial disability group met just three times… and then was scrapped

A cross-government group of ministers set up to “encourage and stimulate progress” towards the inclusion of disabled people in society met just three times before it was scrapped, the government has been forced to admit.

Information released by the Department for Work and Pensions (DWP) under the Freedom of Information Act shows that the government spent nearly four years without any cross-departmental group of ministers working to improve the lives of disabled people.

The information was finally released by DWP following a freedom of information request submitted by Disability News Service (DNS) in June 2018.

But it was only released four days before Christmas, after DNS had lodged a complaint with the Information Commissioner’s Office about DWP’s refusal to provide information about the inter-ministerial group.

Following the first meeting of the group of 13 ministers on 13 March 2014, the then minister for disabled people, Mike Penning, said that setting up the new body showed “how seriously this Government takes improving the lives of disabled people”.

The DWP response reveals that the cross-government group of coalition ministers also met in June (chaired by Penning) and September 2014 (chaired by the new minister for disabled people, Mark Harper) but then failed to meet again before the general election the following May.

The group was set up as part of the coalition’s Fulfilling Potential strategy, which also saw the creation of the Fulfilling Potential Forum, the Disability Action Alliance and the Fulfilling Potential Policy Advice Service, all of which were subsequently scrapped or fell into disuse.

Under the Conservative government elected in 2015, there was no attempt to resurrect the ministerial group on disability, and Theresa May’s new minority government then waited another year after the 2017 general election before setting up a replacement group of 10 ministers in May 2018.

Sarah Newton, the new minister for disabled people, announced in May that she was “really pleased” to announce that the government had created a “new” inter-ministerial working group that she said would “bring the full force of the Government behind ensuring that every disabled person in our country has the ability to reach their full potential”.

This decision came eight months after the UN’s committee on the rights of persons with disabilities told the UK government to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights, and concluded that its cuts to social security and other support for disabled people had caused “a human catastrophe”.

DWP’s freedom of information response to DNS said the department had “reconsidered its position” and no longer wished to rely on an exemption in section 35 of the Freedom of Information Act, which covers communication between ministers and related information.

DWP said it had therefore decided to release the dates of the meetings of the inter-ministerial group (IMG) and the names of the ministers who attended.

But the response said the department held no recorded information that explained why it had decided to scrap the group, and it added: “It is a normal part of procedure for an IMG to be discontinued following a change in government.”

A DWP spokesperson refused to say by noon today (Thursday) why no meetings had been held after September 2014, why the 2015 government did not set up a similar group, and why the 2017 government took until May 2018 to set up an inter-ministerial group.

She also refused to say whether the information released showed a lack of interest in cross-government working on disability between September 2014 and May 2018, and whether the decision finally to set up another group was related to the UN committee’s report.

Instead, she issued a statement claiming that “empowering disabled people in all aspects of their lives has always been and will continue to be a priority for this Government”.

She said: “That is why the Office for Disability Issues continues to drive forward work across the whole of Government to increase disabled people’s participation in society, including through the Inter-Ministerial Group on Disability and Society, which is just one of the many ways in which we’re driving progress on the issues that matter to disabled people.”

3 January 2019



Backlash over ‘disgraceful’ police force that passed video footage to DWP

A Labour police and crime commissioner is facing criticism from within his own party for endorsing his force’s “disgraceful” decision to pass video footage and other information about disabled anti-fracking protesters to the Department for Work and Pensions (DWP).

Wayne Blackburn, co-chair of Disability Labour but also a borough councillor in Lancashire, has written to police and crime commissioner Clive Grunshaw to express his alarm and shock at the tactics of Lancashire police.

Cllr Blackburn is among scores of disabled campaigners who have raised similar concerns since Disability News Service (DNS) revealed last month that the force had passed information and footage of disabled protesters to DWP – in an apparent attempt to have their disability benefits removed – and then claimed that it had “a duty” to do so.

Two senior political figures – Labour’s shadow chancellor John McDonnell and the Green party’s co-leader Jonathan Bartley – have also called for an inquiry into claims that Lancashire police officers have targeted and assaulted disabled people taking part in the protests.

The DNS reports mostly focused on police tactics during peaceful protests about the drilling activities of the energy company Cuadrilla at Preston New Road, on the edge of Blackpool.

Cllr Blackburn told Grunshaw in the letter that he was “deeply concerned” to hear that Lancashire police was passing information and footage to DWP, which he said was “in clear contravention of any person’s right to peaceful protest”.

He said he agreed with McDonnell that these tactics were “shocking” and “unacceptable”, and he said that he was “personally disappointed” that Grunshaw supported the force’s actions.

Cllr Blackburn has asked Grunshaw a series of questions about the force’s relationship with DWP, including asking him: “Are you concerned that you and Lancashire Police are adding to the Conservatives’ hostile environment towards disabled people?”

A spokesperson for Grunshaw told DNS that he was “aware of the concerns raised and will be responding to the questions posed by Cllr Blackburn”.

Following the DNS reports on Lancashire police sharing information with DWP, many disabled campaigners took to social media to express their alarm.

Mark Brown, who writes and speaks about mental health issues, said on Twitter that the force’s actions needed to be seen in the context of “15 years of anti benefits rhetoric” which had led to social security turning into “social surveillance”.

He said: “In the UK we’ve tried to drive down public spending by activating people’s worst instincts and then telling them they’re good boys for telling tales.

Disabled people, especially people with #mentalhealth difficulties, live in fear of malicious fraud allegations.”

After Lancashire police defended its actions on Twitter – telling DNS that it had a “duty” to contact DWP if it had information “to suggest fraud may be being committed” – there was widespread anger among disabled people, including those claiming benefits.

The Mental Health Resistance Network tweeted in response: “This is truly shocking. So even the police have joined in the war against disabled people.”

Another mental health activist, Rick Burgess, tweeted: “The uniting of the shadow DWP penal system and the established criminal justice system, where if one cannot get you the other will, is a highly significant intersection.

We are now under full Stasi like conditions.”

Activist and researcher Caroline Richardson, a member of the Spartacus Network of disabled campaigners, said the force’s actions were “discriminatory and frightening”.

She said on Twitter: “Being reported maliciously for fraud is more worrying than being assessed.

This sends a clear message that if you protest then the Police will report you on suspicion of fraud, without reason/evidence/proof.”

Film-maker and author Richard Butchins told the force on Twitter: “Your officers can have no idea if fraud is being committed but they are clearly spiteful petty minded servants of those in power – disgraceful behaviour.”

Dr Jay Watts, an activist and consultant clinical psychologist, said such actions were “an affront to civil liberties of disabled people” and that a few minutes of video from a protest gave “a false perception of ability”, with disabled protesters often facing “weeks of physical and psychological backlash afterwards but do so to make the world fairer”.

Paula Peters, a member of the Disabled People Against Cuts national steering group, said the police actions were “horrendous and disgusting”, and that “attacking disabled protestors then reporting them” was “the lowest of the low”.

Felicity McKee told Lancashire police: “You can have a disability and leave the house. We don’t just sit inside all day.

Disabilities can vary from day to day, as some days I’m better than others. That isn’t fraud [it is] just fact. What you’ve done is so immoral it’s shocking.”

Another Twitter user with a fluctuating condition, @mookpixie, said: “This is disgraceful. My illness is mostly invisible and varies hugely from hour to hour, let alone day to day.

Most times I leave the house for an hour or two, I then spend days in bed recovering. Could you tell all that from video footage of me leaving the house? No.”

And @neonwheelchair tweeted: “I very, very rarely leave the house now as if they took my PIP away, I’d end up homeless. We can barely eat as it is and can’t heat our home.”

Another, @vashti, added: “You guys suck. You are the reason I’m too frightened to go outside even when, well within my PIP criteria, I’m well enough to do so.”

Meanwhile, the National Police Chiefs’ Council (NPCC) said it was not aware of any targeting of disabled protesters at anti-fracking protests.

An NPCC spokesperson added: “If an incident has occurred contrary to that, it is for the force’s professional standards department to address it in the strongest possible terms.”

Terry Woods, assistant chief constable for Lancashire police and the NPCC lead on shale, gas and oil exploration, said in a statement: “Police forces will always facilitate the right to peaceful protest, while ensuring that disruption to their local communities is kept to a minimum. 

Police officers are trained in maintaining public order and using the minimal force to do that. 

When an officer does need to use force they are accountable for ensuring it is lawful, proportionate and necessary. 

Existing guidance on dealing with fracking protests is currently under review by the College of Policing.

No police guidance has ever, or would ever, recommend targeting disabled people.”

A College of Policing spokesperson said it hoped to launch a public consultation on its updated guidance on the policing of long-term protests in the first quarter of 2019.

The guidance will contain a section about protests focused on onshore oil and gas exploration.

3 January 2019



Bungling DWP announces seventh review of disability benefits errors in a year

The Department for Work and Pensions (DWP) has been forced to launch its seventh costly trawl through the records of disabled people unfairly deprived of benefits following years of serious errors by senior civil servants.

The minister for disabled people, Sarah Newton, announced on the last day before parliament’s Christmas recess that her department would begin another new review this month.

It follows six other reviews launched by her department during 2018 to find disabled people who had been wrongly deprived of their disability benefits.

The latest review is necessary because of an upper tribunal ruling in the case of a claimant moving from disability living allowance (DLA) to personal independence payment (PIP) who had his DLA stopped because he had failed to attend an Atos face-to-face assessment.

The upper tribunal found that the claimant, OM – who had long-standing psychosis, and became agitated and aggressive around people he did not know – had “good reason” for not attending the PIP assessment that the government contractor Atos had told his wife he would have to attend in one of its London centres.

The upper tribunal found that OM should have his DLA reinstated until a final decision was made on his PIP claim, while he should also receive backdated payments from the date DWP stopped his DLA.

This same approach will now be applied to other cases where DLA claimants have had their benefits stopped for not having “good reason” for failing to attend or participate in their PIP consultations, or to provide the necessary information or evidence for their PIP claim, but were later found by DWP or a tribunal that they did have “good reason” for not doing so.

Newton said DWP expected about 4,600 claimants to benefit from a review of such cases.

It has taken DWP more than a year to implement the tribunal’s ruling, which was handed down on 23 November 2017.

The review follows six others that DWP was forced to begin during 2018, all as a result of errors by senior civil servants in the department.

In June, Newton announced a review following a tribunal ruling delivered in March 2017 – concerning a PIP claimant referred to as RJ – on how DWP assesses whether disabled people can carry out activities safely and need supervision to do so.

This was likely to affect people with conditions such as epilepsy, with an estimated 10,000 PIP claimants set to benefit by £70 to £90 per week by 2022-23.

In the same week in June, Newton announced a review of an estimated 1.6 million PIP claims to find claimants who experience mental distress when making or planning a journey.

This followed a court ruling in December 2017 – in the case of a claimant referred to as MH – which found that new rules introduced that year by DWP were unlawful, “blatantly discriminatory” and breached the UN disability convention.

A third review announced in June 2018 related to the way DWP had been assessing an estimated 420 PIP claimants with haemophilia who have the associated condition haemarthropathy (a severe type of arthritis caused by bleeding into the joints).

A fourth review was launched so that DWP could trawl through the files of thousands of other PIP claimants who need support to take medication and monitor their health conditions, following two tribunal findings – in the cases of AN and JM – that found that DWP should have been scoring such claimants in the same way as people needing support to manage treatment therapies such as dialysis.

The fifth review followed a high court ruling in June 2018 that DWP had unlawfully discriminated against two disabled men who each lost disability premiums worth £178 per month when they moved to a new local authority area and were forced to transfer onto the new universal credit.

The sixth review followed the botched migration of an estimated 70,000 former claimants of incapacity benefit and other benefits to employment and support allowance (ESA).

DWP failed to realise that many of these claimants were entitled to income-related ESA – and therefore to associated disability premiums – rather than just the contributory form of ESA.

A DWP spokesperson said in a statement on the latest – seventh – review: “We accepted the judgment and we are committed to implementing it correctly.

Making the necessary changes to guidance is complex and it is right we proceed carefully to ensure claimants receive the payments to which they are entitled.

We have recruited hundreds of extra staff to complete these exercises as quickly as possible.

We take matters relating to benefit underpayments seriously and will learn the lessons from the issues raised.”

By noon today (Thursday), she had declined to confirm that this was the seventh review to be launched by DWP in the last 12 months.

3 January 2019



Traumatised child rape survivor harassed again by DWP as he waits to give evidence

A traumatised benefit claimant has accused the Department for Work and Pensions (DWP) of “sheer malice” after it again broke its promise to stop harassing him while he waits to give vital evidence in a child abuse trial.

DWP’s contractor Maximus sent David* a text message last month telling him that his employment and support allowance (ESA) could be at risk if he failed to attend an assessment set to take place just two days after Christmas.

Disability News Service (DNS) has been reporting on DWP’s continuing harassment of David* since 2016, when former minister for disabled people Justin Tomlinson threatened to stop David’s benefits if he failed to co-operate with an Atos personal independence payment (PIP) reassessment.

David has been told by police that his medical file is sub-judice and cannot be discussed with anyone while the legal process is ongoing, and so he cannot allow DWP or Atos or Maximus access to his medical records.

He has severe post-traumatic stress disorder, caused by the horrific sexual abuse he suffered as a child, and which has led to several suicide attempts.

In 2017, DWP broke its promise not to harass David when Atos asked him to attend a face-to-face personal independence payment (PIP) assessment.

Last year, DWP broke its promise again, when it contacted him to tell him he needed to fill in a new PIP form, before later accepting its error and extending his PIP award.

But the harassment has continued.

On 20 December, he received a text message from Maximus – which carries out assessments under the name of its subsidiary, the Centre for Health and Disability Assessments – warning that his ESA was at risk if he failed to attend a work capability assessment (WCA) on 27 December.

When he rang DWP to complain, he was even told by a civil servant that he was fabricating his claim that his medical evidence was sub-judice.

David said DWP’s continuing harassment was “completely draining”, “dehumanising” and “extremely distressing”, and he could not understand why the department continually ignored the fact that his medical records were crucial evidence in ongoing child abuse proceedings.

He said: “It’s like I can’t escape their gravity of sheer malice and hubris.

I would ask why they repeatedly seek to interview a proven child rape victim.

I’m tired of people thinking I’m a lab animal to be cut open alive.” 

A DWP spokesperson: “We are sorry for any distress felt by [David].

We are all doing everything we can to ensure he continues to receive the benefits he is entitled to.”

The spokesperson said the WCA had now been cancelled, and David had been allocated a member of staff to be a single point of contact with his PIP and ESA.

Asked how this latest harassment had happened again, another spokesperson said: “We’ve addressed [David’s] case and a staff member is working with him to ensure he gets the right support.

We don’t have anything further to add but do look into any issues which are raised by claimants, including on their experience with DWP staff and contractors.”

A Maximus spokesperson said: “As soon as the case was withdrawn by DWP, we cancelled the appointment and immediately ceased our attempts to contact the customer.”

*He cannot be named for legal reasons

3 January 2019



Government broke freedom of information laws over access to 10 Downing Street

The government has broken freedom of information laws by refusing to release documents that could reveal why it has failed to ensure there is a wheelchair-accessible front entrance to 10 Downing Street.

The information commissioner has ruled that the Cabinet Office breached the Freedom of Information Act by failing to release reports to Disability News Service (DNS), including any documents that mention the two steps leading to the iconically-inaccessible front door.

DNS has been trying for more than a year to discover what discussions have taken place about removing the steps.

Although there is step-free access at the rear of 10 Downing Street, wheelchair-users wishing to use the front door must rely on a portable ramp.

The latest request for information came in July 2018, when DNS asked for “any reports or documents on the subject of disability access (including those relating to the steps leading to the front door) at No 10 Downing Street that have been prepared over the last two years”.

The Cabinet Office insisted that the only relevant recorded information was a 20-word extract from a draft memo that had already been released, which spoke of the “improved accessibility” from increasing the size of an internal lift.

But DNS argued that a Number 10 spokesperson had claimed that Downing Street had “undertaken a programme of works over recent years to make sure this historic building is accessible to all who visit”, while Historic England had said the Cabinet Office was “rolling out a programme of improvements to the grade I listed complex to proactively address disabled access”.

Historic England had also told DNS that an “accessibility audit is still being worked through and we will continue to advise as necessary”.

Despite these statements, the Cabinet Office had insisted to the information commissioner that it held no recorded information on disability access at Number 10, or reports or documents concerning discussions with Historic England.

Historic England has also since admitted that it does hold information about access at 10 Downing Street dating back five years but has argued that it cannot release it because of “national security” concerns.

The information commissioner, Elizabeth Denham, has now concluded that the Cabinet Office “holds further information within the scope of the request” and had breached sections 1 and 10 of the Freedom of Information Act.

The Cabinet Office will now have to produce a legal response to DNS by 24 January, either producing the information or explaining why it has an exemption from doing so.

The Cabinet Office said it would now review its response to the DNS freedom of information request.

A government spokesperson said: “We are committed to ensuring Downing Street is accessible. 

A custodian is constantly stationed at the front door so that access can be provided to the building at any time of day. 

In addition, a new lift and more accessible toilets have been installed as part of work to improve facilities in this historic building.”

3 January 2019



OBE ‘is overdue recognition of importance of inclusive education’

A disabled campaigner says the decision to award him an OBE is an overdue recognition of the importance of inclusive education.

Anthony Ford-Shubrook, a youth ambassador with the charity AbleChildAfrica and a trustee of The Alliance for Inclusive Education, was among the disabled people recognised in the new year honours.

Ford-Shubrook, who has campaigned for inclusive education both in the UK and Africa, was awarded the OBE for services to disabled children in Africa.

He said he was “completely shocked” and “ecstatic” when he heard of the award and was “still in shock” now.

In 2016, Ford-Shubrook was one of 17 inaugural Young Leaders – and the only disabled young person – chosen by the UN to promote its Sustainable Development Goals.

At AbleChildAfrica, he continues to campaign for disabled children’s right to inclusive education and sports, and to healthcare.

He has recently returned from Kenya and Rwanda, where he delivered training to young disability rights activists on how to advocate for education for disabled children and young people.

Now in his early 30s, as a teenager he successfully took a pioneering legal case – backed by the Disability Rights Commission – against a sixth form college that had decided the stair-climbing wheelchair he needed to use to reach a first-floor classroom would be a health and safety risk.

It was the first time an injunction had been used to enforce the Disability Discrimination Act in education.

And his undergraduate dissertation on access to education for disabled children in a South African township is used by the South African government in its training for teachers working with disabled children.

He told Disability News Service: “The fact that I’ve been awarded [an OBE] shows that although there’s a lot of work to be done, people are finally realizing the importance of inclusive education, and the benefits it can bring.”

And he said he hoped the OBE would help him continue his campaigning on disability, both in the UK and in Africa. 

He said the fight for inclusive education had been “very important” in his life, because “without going to a mainstream school I would not have had the opportunities I’ve had, would not have been able to do many of the things I’ve done”. 

The government’s own figures showed that only four per cent of recipients in the 2019 new year honours list said they were disabled, compared with five per cent in the 2018 list.

Among other disabled people recognised are broadcaster, conservationist, author and naturalist Chris Packham, presenter of BBC shows such as The Really Wild Show and Springwatch, who receives a CBE.

Packham won widespread praise for the 2017 documentary Chris Packham: Asperger’s and Me, in which he discussed being autistic and made it clear that he would not want to see a “cure” for autism.

He said after the documentary was aired: “We don’t need a cure, there is nothing wrong with us – we are different.

And that difference has enormous biological and social importance.

Many of us have skills to invent solutions, produce art and science to benefit all and to receive these gifts all we need in return is understanding, tolerance and acceptance.”

A CBE is also awarded to artist Yinka Shonibare, whose work explores issues of race and class through painting, sculpture, photography and film, and who has supported disability arts organisations such as Shape Arts.

Martin Stevens, chair of Disability Rights UK, is recognised with an OBE for services to people with multiple sclerosis.

Stevens, who has MS himself and has a background in accountancy and business management, is a long-term volunteer for the MS Society and a trustee for the Multiple Sclerosis International Federation.

Also awarded an OBE are Robin Hindle Fisher, a trustee with Scope, who chaired the charity’s Extra Costs Commission, which looked at ways to alleviate disabled people’s extra living costs; and former Scottish rugby international Doddie Weir, who set up a charity to raise funds to research potential cures and support others with motor neurone disease after he was diagnosed with the condition.

Disabled people awarded MBEs include campaigner John Davidson, for services to people with Tourette’s; wheelchair basketball coach and retired Paralympian Caroline Matthews; and motivational speaker and diversity consultant Andrew Walker.

British Wheelchair Basketball (BWB) said Matthews was a “true ambassador of the sport” and had “tirelessly worked to further the development of wheelchair basketball within Wales and on the international stage”.

As well as winning 125 caps for Great Britain between 2002 and 2011, and competing at the Athens and Beijing Paralympics, BWB said she had “changed the landscape of the sport within Wales” and had been either head coach or assistant coach at club, regional, national and international level.

3 January 2019

News provided by John Pring at www.disabilitynewsservice.com


 Posted by at 14:52