A disabled activist was at the Supreme Court yesterday as judges heard his ground-breaking case that could finally force bus companies to ensure that wheelchair-users can use the spaces reserved for them.
Doug Paulley’s long-running case is the first the Supreme Court has heard concerning disability discrimination in the provision of services.
The importance of the case was underlined by the presence of both the president and the deputy president of the Supreme Court on a panel of seven judges.
And its significance was also marked by the attendance among observers of Liberal Democrat president Baroness [Sal] Brinton and crossbench peer Baroness [Jane] Campbell, both wheelchair-users, as well as Green party leadership candidate Jonathan Bartley.
A ruling on the case is expected before the end of the year.
Paulley, from Wetherby, Yorkshire, originally took legal action after he was denied access to a bus operated by the company First Bus in February 2012, because the wheelchair space was occupied by a mother with a pushchair and the driver refused to force her to move.
His appeal has been funded by the Equality and Human Rights Commission, which told the court that bus companies must ensure that wheelchair-users have priority in using wheelchair spaces and that they must end their “first come, first served” policies.
Paulley originally won his county court case against First Bus in 2013 but that ruling was overturned by the court of appeal the following year – a decision which left disabled campaigners “frustrated” and “appalled” – so he took it to the Supreme Court.
Paulley said before the hearing: “It’s not right that I, and other wheelchair-users, should be nervously looking to see if anybody is in the wheelchair space and wondering what will happen. This can cause a great deal of distress.
“Wheelchair spaces are the only place on the bus that wheelchair-users can travel in; if they aren’t available, wheelchair-users can’t travel.
“This is the single biggest barrier experienced by wheelchair-users when accessing transport, and most wheelchair-users experience this.
“Bus companies need to have clear policies so that we can have a culture where non-disabled people automatically move to other areas.
“More needs to be done to ensure that this space is available to wheelchair-users when needed.”
After the hearing, Paulley told Disability News Service that being involved in such a ground-breaking case felt “weird”, as there was nothing for him to do but watch his “excellent” barristers at work.
He said: “It has happened around me and I get a load of credit but it is really great to have such a high-profile case, as long as we get what we want out of it.”
Even if he loses, he said, the case will still have an impact, because it will show that the Equality Act has “major flaws around enforcement and is effectively unusable”.
He said: “Either way it will hopefully make a change and certainly it has grabbed the public’s attention and people are more aware of disabled people’s right to transport.”
Paulley paid tribute to the disabled people, including many wheelchair-users, who packed out the court-room and had earlier staged a rally outside the building.
He said he was “incredibly lucky to have such a principled and supportive group of people behind this case”, and also thanked the user-led campaigning organisations Transport for All and Trailblazers for their “incredible support”.
Chris Fry, Paulley’s solicitor, from discrimination law experts Unity Law, said: “Unity Law has been proud to support Doug on this case since 2012, and shared his ups and downs throughout this legal process.
“We hope that the Supreme Court will finally make the correct legal and moral decision that supports the overriding objective of social inclusion for disabled people, and find in favour of Doug.”
Rebecca Hilsenrath, EHRC’s chief executive, said that “priority should mean priority”, and added: “We are saying that bus companies must uphold their responsibility and make it very clear to travellers that those spaces are intended for wheelchairs.”
Giles Fearnley, managing director of First Bus, said: “The previous judgment of the court of appeal gave much needed clarification around the priority use of the wheelchair space on board buses, following two previous conflicting rulings.
“We hope that the judgment of the Supreme Court will maintain that clarity for our customers, drivers and the wider industry.
“We believe that our current policy, which is to ask other customers in the strongest polite terms to make way for a passenger in a wheelchair who needs the space, is the most feasible solution.”
Fearnley claimed that First Bus was “leading the industry” in improving bus travel for disabled passengers.
Transport for All (TfA), which has supported Paulley in his case, marked the Supreme Court hearing by releasing case studies of 12 disabled and older Londoners who struggle to access buses every day.
One of them, Jeff Harvey, a TfA trustee, said: “Every time I try to board a bus, I feel stressed because I have to be ready for an argument with the driver and/or other passengers, ready to try to raise my voice enough to be heard from the pavement and get my mobile phone camera ready to take photos of the registration plate if I need to make a complaint.”
Mark Wilson, who frequently uses buses both in the north-west of England and in London, told TfA: “I have been left at bus stops many, many times because there was a parent with a child’s buggy using the wheelchair space and they would not move, and the driver felt unable to ask them, let alone compel them, to move.”
Another TfA trustee, Alan Benson, said: “London has one of the most accessible bus fleets in the country, yet it is still a lottery whether I will get to where I’m going.
“Every week I’m stymied by ramps that are broken or too steep, drivers who don’t stop, or worse, don’t let me off, and by parents with buggies who are unwilling to free up the wheelchair space.
“Each time I had a problem on buses I used to complain to Transport for London, but it didn’t seem to change anything and it happens so often I don’t bother anymore.”
Faryal Velmi, director of Transport for All, said: “It is vital that wheelchair-users and also mobility scooter-users get access to the wheelchair priority space on buses.
“Wheelchair and mobility scooter-users are heavily dependent on buses to get around London because so few Tube stations have step-free access.”
16 June 2016
Ministers are delaying the release of nine secret reviews into the deaths of benefit claimants, even though civil servants apparently prepared them for release three weeks ago under freedom of information laws.
A response to a request to release redacted versions of the documents was completed by the Department for Work and Pensions (DWP) freedom of information team on 23 May, and just needed official clearance to be released.
But the documents – which are likely to be heavily-redacted versions of the nine reviews – have still not been released to Disability News Service (DNS), three weeks later, in an apparent breach of freedom of information laws.
The reviews cover the period from August 2014 to January 2016, and are likely to be similar in format to the 49 reviews that were released by DWP last month following a 21-month battle with DNS to keep them secret.
DWP is so far refusing to say how many of the nine secret reviews concern a claimant who took their own life.
The latest request was submitted on 15 April, but DNS has been told by DWP’s freedom of information team that a draft response was completed on 23 May – three weeks ago – but has still not been signed off so that it can be released.
A DWP spokeswoman apologised for the delay, but refused to explain why the response had not yet been released.
She said: “We always aim to respond to freedom of information requests within 20 working days – in fact nine out of ten responses are sent within that timescale.
“We will get a response to you in due course.”
Many of the 49 reviews released last month concerned the deaths of disabled people who had applied for the out-of-work disability benefit employment and support allowance (ESA), through the work capability assessment (WCA) process.
And many of the reviews – 40 of which refer to benefit claimants who took their own lives – concerned the reassessment of long-term claimants of incapacity benefit (IB).
Although key parts of the peer reviews were missing because they were so heavily redacted, DNS found 10 key recommendations for DWP to take national action to improve the way it treated vulnerable benefit claimants.
DNS is still waiting to hear from DWP if those 10 recommendations were ever carried out.
The nine peer reviews – now renamed internal process reviews – are likely to be scrutinised closely by disabled activists for further evidence of failings in the way DWP has dealt with benefit claimants labelled as “vulnerable”, many of whom are likely to be mental health service-users or have learning difficulties.
They could provide crucial evidence for calls – led by the Scottish-based grassroots group Black Triangle, and backed by many other disabled activists – for former work and pensions secretary Iain Duncan Smith to face a criminal investigation for misconduct in public office following his refusal to address a coroner’s concerns about the safety of the WCA in 2010.
They want to hold Duncan Smith and his former employment minister Chris Grayling to account for their failure to improve the safety of the WCA, when they were warned that it risked causing further deaths.
Last November, government-funded research concluded that the programme to reassess people claiming IB using the WCA could have caused 590 suicides in just three years.
16 June 2016
The equality watchdog’s disability commissioner has told UK airlines to “show leadership” and promise to pay full compensation to disabled passengers whose mobility equipment is damaged in transit.
Lord [Chris] Holmes spoke out after it emerged that airlines were still relying on a loophole provided by the Montreal Convention that allows them to offer only minimal compensation for wheelchairs and other equipment damaged by airlines, 14 years after a campaign was launched to address the issue.
Disability Now magazine launched its Flight Rights campaign in 2002*, after concerns were raised by leading disability consultant Phil Friend, who helped launch the campaign, about the frequency of wheelchairs being damaged or even lost by airlines.
But despite European regulations, introduced in 2006, that provided new rights for disabled passengers – which mean airports and airlines must now provide them with free assistance – the issue of compensation for damage and loss to wheelchairs is still unresolved.
Under the convention, compensation for damaged items – including wheelchairs – is calculated on the basis of weight rather than value.
This week, the Civil Aviation Authority (CAA) told Disability News Service that it had decided to investigate how often mobility equipment was being damaged by airlines or airports across the UK and what measures were in place to support disabled passengers when such incidents occur.
The CAA decision came following publicity about the case of disabled actor, writer and director Athena Stevens, whose electric wheelchair – worth more than £25,000 – was badly damaged when she tried to take a British Airways flight to Glasgow from London City Airport.
Eight months on, Stevens is still trying to secure the compensation necessary to repair her wheelchair and reimburse other significant financial losses, and this week wrote an open letter accusing both the airline and the airport of breaching her rights, lying, double standards, jeopardising her health, discrimination and appalling customer service.
Lord Holmes was highly critical of both British Airways and London City Airport.
He said: “Disabled people are often deterred from flying for fear of loss, damage or destruction of their mobility equipment. Athena’s story is a case in point.
“She has been left without a replacement chair for eight months. We’re not talking about a suitcase or a set of golf clubs – this is a person’s mobility and independence.”
He said UK airlines had a “moral responsibility” to stop hiding behind the Montreal Convention when they damage mobility equipment.
Efforts by the European Commission to introduce new regulations that include measures to allow disabled air passengers to receive full compensation for damaged wheelchairs were approved by MEPs more than two years ago, in May 2014.
But the European Council – made up of EU heads of state, including UK prime minister David Cameron – has so far prevented it becoming law.
Lord Holmes said: “This is an issue which cannot wait any longer. We are therefore calling on British air carriers to show leadership and proactively adopt this policy voluntarily to ensure that disabled people are offered full and, most importantly, timely compensation if their mobility devices are damaged by the carrier.”
Phil Friend said that he was still frequently asked for advice about mobility equipment that had been lost or damaged by airlines, 14 years after he helped launch the Flight Rights campaign.
He said the situation was slightly easier now because companies such as Fish Insurance will insure equipment against damage by airlines, although they will not cover the full cost of expensive electric wheelchairs.
But he said: “The whole air travel experience is still back in the dark ages as far as disabled people are concerned. And we are paying the same fares as everyone else.”
He added: “The whole experience on air travel is fraught with concerns and enormous anxiety.
“Your anxiety levels increase, you’re just not sure what state your chair will be in when you get it back.”
He said the 2006 EU regulations had led to “an incremental improvement”, but they had not dealt with the issue of “proper compensation for people who lose very, very expensive equipment”.
A London City Airport spokesman said: “We have been in communication with Ms Stevens from the outset and the airport has made every effort to assist her in resolving this situation. Because this is a legal matter we are unable to provide further comment.”
British Airways claimed that “in those circumstances when we are responsible, we pay compensation to the value of the damage caused over and above the limits of the Montreal agreement”.
But Stevens has told DNS that the airline was lying and that it had told her it “would not pay above [Montreal Convention rates], even if it was seen to be their fault”.
*The relevant Disability Now stories are no longer available online other than through specialist archiving websites
**The Equality and Human Rights Commission has published advice for disabled air passengers
16 June 2016
Official figures suggest that a new appeal stage introduced for unsuccessful claimants has been little more than a delaying tactic aimed at reducing the number of disabled people claiming benefits, say campaigners.
The Department for Work and Pensions (DWP) has finally published statistics showing the impact of the process on claimants of the out-of-work disability benefit employment and support allowance (ESA).
Since October 2013, claimants of ESA and other benefits who want to dispute a decision made on their claim have had to ask DWP to reconsider the decision – a “mandatory reconsideration” (MR) – before they are allowed to lodge an appeal with the independent benefits tribunal system.
And now the first MR figures to be published by DWP show that only about 10 per cent of ESA claimants who appeal through the MR process are successful.
When MR was first introduced, DWP civil servants were overturning more than 40 per cent of ESA decisions.
But that figure has now fallen dramatically, and in the last year only 11 per cent of decisions have been “revised and allowed” – out of more than 10,000 MRs a month – with the proportion dropping even further in the first months of 2016.
For claimants who dispute being found fit for work, the success rate is even lower, although it is not possible to calculate from the figures published so far how it has changed since October 2013.
Campaigners and benefits experts have stressed that it is not possible to draw firm conclusions from the figures because it is not yet clear how many of those claimants turned down at the MR stage went on to be successful at a tribunal.
But they suggested that the figures show the MR stage is simply delaying the benefits process, and pushing disabled people already at risk of poverty into greater hardship.
Stef Benstead, lead researcher on Beyond the Barriers, the report by the online Spartacus network that called for a replacement for the “inaccurate, unreliable and invalid” WCA, said the latest overturn rates of about 10 per cent – far lower than the more than 50 per cent of independent tribunal appeals that succeed – suggest that the MR system is not working successfully.
She said: “This suggests that the MR is functioning mostly as an additional layer of bureaucracy, with little to no positive effect on the speed of correct decision-making.
“Given the fall in numbers being assessed as fit for work, an intermediate step like the MR seems no longer necessary as an attempt to speed up the overall appeal process.
“This may be a good time to scrap the MR and return to the old system, which allowed the DWP to revise decisions before they reached tribunal and forward the remainder on directly, thus streamlining the process for the claimants.”
But she added that many more people were now being placed straight in the ESA support group after their WCA – 60 per cent – than when ESA was first introduced, which meant fewer people were having to use the appeals process.
But he said that nearly three in five ESA appeals to tribunals were still proving successful, despite the introduction of MR.
He said his conclusion was that MR was “a total waste of time and designed to put you off appealing”, and was succeeding in this aim even though 58 per cent of those who do still appeal to tribunals are winning their cases.
He told Disability News Service that it would be difficult to draw wider conclusions until DWP had published the latest statistics on WCA outcomes, but that the MR statistics were “alarming” when compared with the proportion of claimants proving successful at tribunal.
Dilworth said that, based on anecdotal evidence, be believed that many disabled people were being discouraged from appealing and “simply do not have the energy or means to battle the DWP in their relentless efforts to find the sick fit for work”.
He said this often leads to cases in which people are found fit for work, and cannot cope with the jobcentre and the conditions placed upon them, and then become so unwell that they either give up claiming benefits or have to lodge a new claim because their condition has significantly worsened.
He said: “MR is not working. No amount of trying to put right a wrong decision is ever going to work unless you get down to the root of why these often absurd decisions are being reached in the first place.”
Rick Burgess, from Manchester Disabled People Against Cuts, said he believed MR was just a “rubber stamp for the original decision”, and “a delaying tactic” designed as “just another whittling down of people” by making the “tortuous” process “so abusive it is too difficult for people to navigate”, and leaving them “at profound risk of homelessness, starvation and death”.
Michelle Maher, co-founder of the WOW petition, pointed to the number of requests for MRs – and the number of MRs turned down – in February, March and April this year being the highest yet.
She said the figures suggested “a tightening up of the WCA”, which “just breeds immeasurable stress to all of us and again the Tory duty of care to us thrown out of the window”.
Pat Onions, founder of Pat’s Petition, said: “The DWP are operating a system that runs under rules that they invented and that they interpret.
“The DWP are judge, jury and defendant in all these appeals for reconsideration.
“It’s their self-contained world and a mystery to everyone else. We would have to understand it to make constructive comment.
“The system bears little relationship to reality in the labour market and the real world. It’s time for a new system that means something real. Then we could comment.”
A DWP spokesman said the department would not be scrapping the MR process.
He said: “The fact that nearly 90 per cent of decisions were not overturned last year shows that in the majority of cases decision-makers are getting it right first time.
“It is important to remember that mandatory reconsiderations were introduced to make the system as fair as possible for those going through it.”
He denied that the WCA had been tightened up to make it harder to claim ESA since the beginning of 2016, and insisted that “no changes have been made to the WCA”.
Asked why there was such a low success rate for MRs when the success rate for ESA tribunals was consistently at 58 per cent, he said: “The majority of decisions are overturned at appeal because of the claimant’s oral evidence or new written evidence is presented at the hearing. “
16 June 2016
Five disabled peers have called on the government to strengthen a new bill to ensure that all new buses have to be fitted with audio-visual announcements.
They were taking part in last week’s second Lords reading of the bus services bill, which aims to give local authorities a greater role in providing bus services and improve information for passengers.
But the five peers said more needed to be done in the bill to improve the accessibility of buses for disabled people.
All new buses will already have to meet accessibility regulations by the end of this year, and government statistics show that 89 per cent of buses in England already do so.
But those regulations – which include facilities such as low-floor boarding, visual contrast on step edges, handholds and handrails, priority seats, and spaces for wheelchairs – do not include audio-visual announcements.
Baroness [Jane] Campbell said that access for disabled passengers “remains a major challenge for the bus industry”.
She said that providing audio-visual (AV) announcements on buses would open up travel not only to people with visual impairments, but also to those such as people with dementia, autism, learning difficulties and mental health conditions.
She said the bill “could showcase how to make equality and accessibility part of the DNA of bus design and operations, to a standard that is consistent and reliable”.
She added: “Passengers should know in advance what to expect and be confident that they can rely on bus travel wherever they are, as they go from local authority to local authority.
“Freedom of movement is a fundamental human right. If disabled people are to enjoy that right too, accessibility must be hardwired into the design and delivery of our bus networks.”
Baroness [Sal] Brinton, president of the Liberal Democrats, said that audio-visual announcements were vital for wheelchair-users like herself who have to travel with their backs to the direction of travel.
And she said there was “real concern” over whose job it was to ensure that the existing bus regulations were complied with.
She said: “It is self-evidently discriminatory to keep treating people with disabilities less well than other bus-users, and the bill is a perfect opportunity to remedy those deficiencies.”
Lord [Colin] Low criticised the bill for failing to include “serious steps to end the continued inaccessibility of buses to many disabled people” and said it was disappointing that the government had not used it to ensure that all new buses are fitted with AV.
He said that only about 19 per cent of UK buses were fitted with AV, but 97 per cent of them were in London, whereas AV had been a requirement on all new railway and light railway systems since 1998.
And he pointed out that the Department for Transport found that it could cost only £5.75 million a year to fit all new buses in the UK with AV.
Baroness [Tanni] Grey-Thompson, a board member of Transport for London, said she was a regular bus-user in the capital, but not near her home in the north-east of England “because of issues with access, routes and timetabling”.
She also pointed to the importance of AV as a wheelchair-user, because she has to face backwards when travelling on a bus, and she agreed with Baroness Brinton that one of the problems was the lack of an enforcement body for the bus access regulations.
Lord Holmes, the fifth disabled peer to speak in the debate, and disability commissioner for the Equality and Human Rights Commission, said that accessible buses were important both for improving access to employment and addressing social isolation.
He said: “If there is no accessible transport, employers can do everything they like to enable an inclusive, accessible workplace, but if blind and visually-impaired and other disabled people cannot get on the transport, those efforts are largely wasted.”
He added: “Audio-visual announcements obviously benefit me, but they benefit all bus users; for example, people unfamiliar with an area or people who may be distracted.”
Labour’s Baroness Jones, a shadow spokeswoman on the environment, food and rural affairs, said her party backed the call for audio-visual announcements on all buses and for all drivers to receive mandatory disability equality training.
Lord Ahmad, the Conservative junior transport minister, said the bill would allow new accessibility standards, such as audio-visual announcements, to be “set locally in response to the needs of local communities”, but he did not suggest that the government would make this mandatory across the country.
He said the government was developing guidance on disability equality training, and would be working with the bus industry to promote it before an EU regulation that will make such training mandatory comes into force in 2018.
Lord Ahmad also agreed to meet with Baroness Campbell and other peers to “see how we can further strengthen the provisions of the bill to ensure that we provide accessibility”.
He said he would address the issue of access to wheelchair spaces on buses after the conclusion of the legal case brought by wheelchair-user Doug Paulley, which was being heard by the Supreme Court this week.
16 June 2016
MPs have shied away from banning the use of Taser stun guns in psychiatric wards.
The ban was proposed by the human rights campaign group Black Mental Health UK, and taken on by the Liberal Democrat MP and former care services minister Norman Lamb.
Lamb proposed an amendment to the government’s policing and crime bill, which would have banned police officers from using electroshock weapons on psychiatric wards.
He said he wanted to prompt a debate about the use of such weapons, which although they were described as “non-lethal”, have been linked to almost 10 deaths in the past 10 years.
Lamb told fellow MPs, during the bill’s report stage: “I am delighted that the home secretary herself has said: ‘I have been hearing stories, for example, of Tasers having been used in mental health wards and you think, ‘Hang on a minute, what is happening here?’’
He added: “That is what we should all be doing: we should be questioning whether that is appropriate.”
Labour MP Kevan Jones backed Lamb’s amendment and said: “I can envisage no circumstances in which it would be necessary to use a Taser on a mental health ward.”
The Conservative MP Charles Walker proposed his own amendment, which would mean that a police force would have to notify the home secretary within a week if it used a Taser on a psychiatric ward.
He said: “[Norman Lamb] will argue, with great justification and passion, that Tasers should never be used on mental health wards.
“My heart is with him, but my head says that there may be some highly-charged situations where a Taser needs to be used.”
Walker also proposed an amendment which would mean that the home secretary would have to be notified within a week if police officers were deployed on a psychiatric ward.
Walker said: “I know that Black Mental Health UK never wants to see police officers used on mental health wards, and I share that view, but there will always be occasions where that possibility remains.
“When police are deployed on mental health wards, that information needs to be made available immediately.”
The policing minister, Mike Penning, said: “As [Charles Walker] said earlier, my heart tells me that the use of a Taser within a secure mental health facility must be wrong, but my brain and my experience tell me that in exceptional circumstances – it must not be the norm – it could happen.”
He added: “I understand the risks that [Norman Lamb] alluded to, but Tasers have saved lives.”
Penning said that ministers would work with MPs to improve the recording and reporting of incidents involving police officers and Tasers on psychiatric wards, which he suggested would be a role for police and crime commissioners (PCCs).
He said: “If we believe in and are aiming for localism, PCCs should know what is going on in their part of the world, and that information should be made available to the public and not left opaque.”
None of the three amendments proposed by Lamb and Walker have been added to the bill, which will now be considered by the House of Lords.
Matilda MacAttram, director of Black Mental Health UK (BMH UK), criticised Penning’s response to Lamb’s amendment.
She said: “Police weaponry has no place in a clinical mental health setting.
“Tasers were originally introduced as an alternative to guns, so that police officers had what is described as a ‘less lethal’ option available to them.
“During the ongoing expansion of Tasers to frontline officers, mental health providers have drawn up clinical policy on their use in hospitals.
“Tasering patients on locked psychiatric wards raises serious human rights concerns.
“The United Nations (UN) Committee Against Torture (CAT) has stated that Taser X26 weapons provoke extreme pain, and constitute a form of torture.
“There is little point in the UK being a signatory to UN treaties like the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, if the protections that they afford are not extended to the most vulnerable in our society.
“Minister Mike Penning’s response to the amendment Norman Lamb MP tabled for BMH UK for the ban of Tasers is not acceptable.
“You do not monitor human rights abuses – you stop them, and as such the use of Tasers or the new phase of conductive electrical devices (CEDs), which will be introduced shortly, need to be banned in clinical mental health settings.”
16 June 2016
A group launched last year to represent people with learning difficulties across England has been scrapped and replaced by a non-user-led organisation that will be partly controlled by service-providers.
People First England (PFE) was set up last year by Gary Bourlet, who founded Britain’s first People First self-advocacy organisation in London in 1984, and fellow disabled activist Kaliya Franklin.
They joined forces in a bid to set up the first national user-led organisation for people with learning difficulties to cover just England, which they hoped would develop into an umbrella organisation for self-advocacy groups across the country.
In the first few weeks of the project they raised nearly £30,000, but it later struggled to raise further funds and they have now been forced into a merger that will leave people with learning difficulties in a minority on the new organisation’s board.
At the time of its launch, concerns were raised by other self-advocacy campaigners that PFE’s plans to work closely with families, carers and groups not led by disabled people could eventually see it become a non-user-led organisation that would have more in common with service-provider charities like Mencap.
A year on, some disabled activists fear that those concerns have been born out.
PFE has now merged with the charity the Housing and Support Alliance – which had been supporting PFE – to create Learning Disability England (LDE), which was launched at the House of Lords this week.
Instead of LDE being run by disabled people, power will instead be shared between “people with learning disabilities, families and friends, and organisations”, with a nine-strong board having three family representatives, three people from disability organisations and three self-advocates.
LDE is likely to replace campaigning work previously done by the Learning Disability Alliance – which itself was made up of service-providers, the National Forum of People with Learning Disabilities and the National Valuing Families Forum – and the Learning Disability Coalition, which had a similar make-up to the alliance.
But concerns have been raised that LDE’s funders include a string of organisations that earn money by providing services to people with learning difficulties, including Care Management Group, Brandon Trust, Advance Housing and Support, United Response and MacIntyre.
Andrew Lee, director of policy and campaigns at People First Self-Advocacy, who raised concerns last year about PFE, said he was “very worried” about the new organisation and “not surprised that my concerns have actually become a reality”.
He said he feared that LDE would lead to the voices of people with learning difficulties being “sidelined”, while he was also concerned about the risk of “tokenism”.
He said: “Unless people with learning difficulties are in complete control of an organisation, then their voices will always be pushed aside.
“I am very worried that the voices of people with learning difficulties are being trampled on in such a way.
“Obviously the views of family members, although they are important, are not the actual views of people with learning difficulties.
“They will always be different because people with learning difficulties will be saying, ‘I want choice and control, I want to live on my own, I want to get married, I want to have children and have aspiration,’ but they are being told, ‘you can’t,’ or ‘you can, with conditions’.”
He said the creation of LDE highlighted the need for genuine, properly-funded self-advocacy organisations.
Lee said he heard only last week that another local People First organisation had lost its funding, which he said came “at the very time when we need a strong voice”.
LDE said that its immediate priorities would be to develop projects to support people with learning difficulties to speak to the media, and to be more involved in the political process, something PFE had focused on.
It will also bring together “experts in various fields to help make policy stronger and effective”, work with a “network of academics to strengthen the effect of research”, set up a “fighting fund” to “help people challenge prejudice and discrimination”, and provide members with advice and support.
Bourlet told Disability News Service that there had not been enough funding to continue with PFE.
Asked about replacing a user-led organisation with one that was partly controlled by the big service-provider organisations, which make money by providing services to people with learning difficulties, he said: “We are stuck in a hard place and people have to understand that money does not grow on trees.
“They put the biggest amount of money in, but it doesn’t mean they will have the majority voting.”
He said that the new organisation was about “all coming together” and “strength in numbers”.
He said: “There are lots of good self-advocacy organisations and others saying the right things but it is easy to ignore because they are all doing it individually.
“A lot of these local groups have been too wrapped up in getting local funding from local authorities.”
He said there had been a mixed reaction to LDE from other self-advocates and self-advocacy groups.
Bourlet said: “Some self-advocacy groups think you shouldn’t mix with families and professionals because families and professionals sometimes speak for us. Many self-advocates liked the idea that we had strength in numbers.”
He said he hoped that PFE might be resurrected one day when there was more funding, and that they would look again at the idea in three years’ time.
Bourlet said earlier in a statement that the new organisation would be “steered by people, families and organisations”.
He said: “We are creating this now because for far too long services have been bad and self-advocates are tired of fighting a lone battle.
“By coming together we can fight for better changes in our lives.”
He added: “We are not equal in our society. If you have a learning disability, you’re more likely to die at a younger age than a non-disabled person.
“Learning Disability England will bring people together to fight all these bad things that are happening and to campaign for the rights of people with learning disabilities and their families”.
The disabled crossbench peer Baroness [Jane] Campbell spoke at the LDE launch event, and offered her support to the new organisation.
She said: “For too long, people with learning disabilities have been consistently let down, sometimes at great cost.
“The time is right for the voice of people with learning disabilities to be heard loud and clear.”
After DNS asked her afterwards about concerns with the change from PFE to LDE, she said she had been impressed by the number of people with learning difficulties with enthusiasm for self-advocacy at the LDE launch event.
But she said that most of what she knew about LDE was what she had learned at the launch, and she would now “have a good look” at the new organisation and how it was run.
16 June 2016
A leading Deaf arts festival director has been recognised in the Queen’s birthday honours after years of work that have seen her develop relationships with disabled artists from across the world.
Ruth Gould, artistic director of Liverpool-based DaDaFest, has been recognised with an MBE for services to disability arts.
Her work with DaDaFest over the last 15 years has provided a platform for Deaf and disabled artists to appear in what is now the biennial DaDaFest International festival.
She said she was “honoured to be acknowledged with an MBE, for doing the work I value and feel immensely proud and passionate about”, and she paid tribute to the people who have been “part of the disability and deaf arts story”.
She said: “I especially want to honour the many artists and activists who are no longer with us, to remember their work and the impact they had to change lives through the lived experience of disability.”
Jane Cordell, DaDaFest’s chair, said Gould was a “global phenomenon” and had “helped gain national and international recognition of how quality deaf and disability arts can change perceptions and lives, and challenge social injustice”.
Gould said she hoped the publicity surrounding the MBE would “help raise our profile and make people take note of our work”.
She said she believed it particularly recognised the festival’s recent growth, with the last DaDaFest in 2014 attracting more than 800,000 visitors, while there was also an exhibition in the US, and DaDaFest was now hoping to develop festivals next year in the Indian cities of Mumbai, New Delhi and Kolkata.
She has previously been critical of government cuts and reforms that have impacted on disabled people, but she said she had never considered turning down the MBE because it was an acknowledgement that disabled people are in roles where they can “lead and develop work”.
She said: “Whilst I oppose the government’s track record of hitting those who are already the hardest hit, I will not stop saying what I feel as we live in a country which always allows freedom of speech.
“We must have the right to campaign and critique and this award may give me more scope to say how I view things.”
In all, 1,149 people received awards in the birthday honours, including 477 receiving MBEs and 215 handed OBEs, and 5.5 per cent of them saying they considered themselves to be disabled people.
Dr Peter Ingram-Monk, who receives an OBE for services to disabled people in Dumfries and Galloway, said he was “very pleased indeed” with the award.
The voluntary work began after he retired in 1999, after a working life that had seen him running five companies that manufactured construction equipment, despite the pessimistic predictions of the surgeon who treated him in 1947 after he contracted polio as a teenager.
He moved to Scotland with his wife after his retirement, but eventually became involved with about 20 different disability organisations and ended up working seven days a week.
He said: “It wasn’t my style to stay at home and do nothing.
“I knew there was an organisation for disabled people in the area so I phoned up the chair and told her that I had been in business for 50 years, and she arrived on the doorstep the next day. I never looked back.”
He was awarded a doctorate by Heriot-Watt University Edinburgh for his work designing and helping to implement a new course – mainly aimed at disabled people – on access and inclusive design.
Ingram-Monk has now retired from all his voluntary positions except for chairing the Dumfries and Galloway accessible transport forum and the Dumfries and Galloway disability access panel.
He said: “Things have improved for disabled people, but there is a long way to go.
“There is much more to do, but I think I have made a contribution.”
Another recipient of an MBE was Paralympic sitting volleyball star Martine Wiltshire (formerly Wright), who receives the award for services to sport.
She suffered traumatic and life-changing injuries in the 7 July bombings in London in 2005, but later went on to become a successful public speaker and has earned more than 60 caps for the Great Britain sitting volleyball team, appearing in the London 2012 Paralympic Games.
She said: “I am absolutely honoured to accept this award. I am a product of the power of sport, which has positively impacted not only my life but also those of many others across our nation.
“This is an award that recognises the contribution of volunteers, coaches and officials and those behind the scenes that help to put the ‘great’ into Britain.”
Another recipient of an MBE was Christian Raphael, who receives an MBE for services to people with complex and severe disabilities in the east of England.
He is a founding member of the Cambridge High Support Needs Committee, helping people with learning difficulties in his area to discuss the issues that affect them.
He has also campaigned on issues such as Changing Places toilets, and improving hospital services, and has spoken at conferences and workshops, as well as working as a disability consultant.
Also recognised with an MBE is journalist Melanie Reid, who became disabled after a horse-riding accident, and has since built a large following with her weekly Spinal Column in The Times.
16 June 2016
A mental health service-user who has been sectioned more than 30 times in the last 20 years has spoken of her shock at being recognised in the Queen’s birthday honours.
Jan Rogers, who receives an MBE, believes the award came as a result of her work on the expert reference group set up by the Department of Health for its review of the Mental Health Act code of practice.
She said her experience on the reference group was “brilliant” and contrasted with other organisations that ask service-users to take part in such work in order to just “tick a box”.
She said: “There were a few sections where we did make a difference. It was a huge journey for me, it was a part of my recovery that I will remember for the rest of my life.
“We were speaking to people who had the power to change things and they were there and they wanted to listen.”
Rogers, who has been married for more than 37 years – and has 10 children, including four step-children – volunteers with the Ponthafren Association, in Powys, mid Wales, which supports people with experience of mental distress.
Volunteering has played a significant part in coping with the voices and hallucinations she has experienced since she suddenly became ill in 1992 as a result of a past traumatic event.
Since then, she has been arrested and sectioned more than 30 times, and has described how she has been pepper sprayed, thrown in the back of a police van in a cage, held down in handcuffs over a wall, and stripped of her clothes in a police cell.
She said: “I have been arrested and chucked in a cell and they wouldn’t understand why I wouldn’t sit down, but it was because I thought there were 20 other people in the cell.”
She has spoken of how her treatment can be completely different with officers who know her, and therefore might allow her to pace backwards and forwards, instead of being held down, and will speak to her quietly and at a distance and even allow her a cigarette.
She has given many talks to frontline officers with Dyfed-Powys police about how the police treat mental health service-users.
Rogers said one of the reasons she volunteers is that it means she does not feel so guilty when she receives her benefits, even though she knows she cannot do paid work.
And now she says the government’s cuts and reforms to disability benefits are “knocking on my door and I just don’t know how to deal with it”, as she has an imminent reassessment for out-of-work benefits.
She fears that because she can pick up a two-litre carton, turn a page and take simple instructions, she will be found ineligible for employment and support allowance, even though when she’s taking instructions she needs to work out whether the person talking to her is real or imaginary.
She said: “I tend to joke a lot and smile a lot because I don’t see the point in walking round showing on the outside what I feel on the inside.
“I have won loads of awards, I am always smiling when I am in the paper, but apparently if you have mental health problems you’re not allowed to win awards or smile.
“I don’t mind putting hours in or working, but getting paid to do it is a whole different kettle of fish… It doesn’t make sense.”
She said she believes her experiences have proved that it is always worth speaking out.
She said: “A lot of people think it’s not worth saying anything because nothing will change. If you [think], ‘What’s the point, things will never change,’ then they never will.
“We should think the other way. We may not move a mountain but you can make a difference. It doesn’t matter how much.
“As long as one person listens, it’s one more person who understands.
“You should keep hoping that someone, somewhere, will listen and they will take it forward. That’s all you can do.”
Rogers hopes her experience with the code of practice and her other campaigning work will persuade the government that it needs to encourage disabled people to “carry on challenging things”.
And she says she hopes the government also realises that – in order to get a “360-degree view” – you need everyone around the table, including medical professionals, voluntary organisations and service-users.
She said: “The more people you have to sit round the table the better, because you can take everything into account.”
16 June 2016
By Raya Al Jadir
A Paralympic goalball star has lost his legal case against a council that switched off the traffic lights in a busy shopping area – in order to create a “shared space” street design – leaving him and other blind and visually-impaired people unable to cross the road.
Simon Goodall, who represented ParalympicsGB at London 2012, argued that the decision by Reading council to turn off the lights in January 2015 had placed him and other disabled people at risk.
He had appealed to the high court this week against its refusal to order a judicial review of the council’s decision, but his appeal was rejected.
The courtroom had been packed with guide dog-users and other visually-impaired people, some of whom had travelled from Scotland.
Goodall’s bid to force the council to think again over the road layout in the centre of Reading had received backing from disability organisations including Berkshire Disabled People Against Cuts (DPAC), Berkshire Guide Dogs for the Blind, Berkshire Vision, Reading Mencap, Reading Arthritis Matters and a representative of Age UK, who all combined to produce a leaflet detailing their concerns.
The court hearing was attended by Lord [Chris] Holmes, himself a blind retired Paralympian and now disability commissioner for the Equality and Human Rights Commission.
Lord Holmes has previously called for “an immediate moratorium on all shared space” and has described such projects as “dangerous and costly planning follies” that are turning town centres into “dangerous third world traffic free-for-alls”.
He has accused “overzealous councils” of “risking public safety for aesthetics”, leading to “confusion, chaos, unnecessary cost and catastrophe”.
Although Goodall lost this case, he is now likely to take a disability discrimination case against Reading council in the county court for failing to make a reasonable adjustment to allow him to access services in the centre of Reading.
Shared space designs usually remove kerbs, road markings and traffic lights so pedestrians and motorists and cyclists have to make eye contact to establish right of way, but blind and partially-sighted people like Goodall and Lord Holmes argue that this risks their safety.
In Reading, the council switched off the lights at the junction of St Mary’s Butts, West Street, Broad Street and Oxford Road, but later installed a pedestrian crossing nearby in Oxford Road.
Goodall’s lawyer, Chris Fry, of discrimination law experts Unity Law – which last July produced a legal guide to shared spaces – said the court’s decision was “really alarming”, while he said Goodall was “very disappointed”.
He said the court had decided that the council had met its public sector equality duty under the Equality Act by simply considering the impact of its decision on disabled people.
Fry said that councillors had accompanied blind and visually-impaired people on a site visit last year but had ended up having to help them across the road because they weren’t able to cross independently and safely.
He said the court could have taken the view that the case was of “a wider social importance” and so should have been allowed to go to a full trial so it could be explored in more depth.
He said: “The fact that they didn’t and relied on a procedural way out is a full cop-out for me and one which everyone in the court-room felt was a disappointing outcome.”
Marry Cross, founder of Berkshire DPAC, said the court’s decision was “a real slap in the face”.
She set up a petition that secured more than 2,000 signatures, asking for the traffic lights to be switched back on, but she said the council “wouldn’t listen to the argument that people were losing their independence”.
She said: “Blind people now have nothing to tell them when it is safe to cross, as the lights used to have a special tactile signal for them as well as the beeps.
“Deaf people can’t look in all directions at once and people with learning difficulties have little or no chance of understanding when it is safe to cross.
“Those of us who are slow because of mobility impairments or just old age, find it very frightening because the area of road you have to cross is so wide.”
Cross added: “Most disabled people I know and many elderly people have told me they don’t go into town anymore because they don’t feel safe.”
Tony Page, Reading council’s lead member for strategic environment, planning and transport, said in a statement: “The council notes today’s judgement which confirms the previous high court decision from March this year, refusing the applicant permission to apply for judicial review.
“If the applicant wishes to appeal today’s judgment to the court of appeal, he has seven days in which to do so.
“The council does not intend to comment further until that seven-day time period has expired.”
16 June 2016
News provided by John Pring at www.disabilitynewsservice.com