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