Services or Swervices?

Over the past few weeks, I’ve become increasingly concerned about the struggles that some disabled people seem to have when using or accessing the most basic customer service.

Let me explain; the Guardian recently published a story about Anne Wafula Strike, a Paralympian wheelchair user who was forced to wet herself on a train because the accessible toilet was out of order. (http://bit.ly/2jw0Xzz) A few days later I came across the story that Frank Gardner, a wheelchair user and BBC journalist, had been left on a plane because the equipment needed to help him disembark was delayed. (http://bit.ly/2jvKYkV) Then Socitm which represents IT and digital professionals in the public sector, published research which revealed that one-third of website home pages used by local authorities are not accessible to many disabled people. (http://bit.ly/2jvY41G).

I guess these stories are just the tip of the iceberg and that many of you have personal horror stories about the lack of accessible services you’ve encountered.

What troubles me is that legislation was passed back in 1995 that was supposed prevent these difficulties from arising. So what is going on?

Clearly, financial stringencies have a part to play, but I’m not convinced that this is the main reason. I sense that for some service providers disabled consumers are just a nuisance. They think it is less expensive or less complicated to ignore us and hope that by placing more barriers in our way or by making life harder for us, we will go away. Hence the term “swervices not services.”

Am I being harsh or exaggerating the situation? I don’t think so! We have been complaining about the lack of appropriate customer service and access for years; we have eschewed the benefits of inclusive design for decades; we’ve protested, sued and lobbied and despite all this, our concerns continue to be disregarded.

Perhaps there is some light at the end of the tunnel. Doug Paulley’s recent victory in the Supreme Court concerning wheelchair spaces on buses is a pointer to customer service providers that they will have to do more or face serious consequences. (http://bbc.in/2jGj3Bx)

Let’s change the future!

I thought I’d take a few moments of your time to share some thoughts with you before we head off for the Christmas holidays.

The first is the news that my youngest daughter Grace recently presented us with our fifth grandchild a lovely little boy who will be known as Austin James. We now have enough grandchildren to form a basketball team

Basketball Practice
Getting ready for the future

although because they are all under seven, we might have to wait a while before they start winning any medals. The arrival of baby Austin got me thinking about the kind of world that he and our other grandchildren will inherit.

Will it be a world where people routinely begin all their sentences with the word “so” which drives me to distraction? Will they still have to cope with individuals who say “Pacific” instead of “specific”? Will radio stations that claim to play non-stop music still spend fifteen minutes in every hour pumping out endless poorly produced adverts that exhort people to buy stuff they don’t need? Will they still be told that 78% of 92 women agree that face cream X got rid of their crow’s feet? Will “Strictly” and “Bake Off” still be on the telly?

Will the world still talk endlessly about saving the planet but never agree about how it should be done? Will the conflicts that so beset our time be resolved or will the politicians still be talking but doing nothing?

Will they still live in a world where disabled people find acceptance difficult to come by? Will the unemployment gap for disabled people have been halved? Will they live in a world where equality, respect and tolerance are commonplace?

If we are to see real change, then we need to stop talking and start doing. The problem is that everywhere we look we are overwhelmed by the size and scale of the task, and we could be forgiven for feeling utterly powerless.

My good friend Dave Rees told me this story; you might have heard it.

Apparently, millions of starfish were left stranded on a beach after a violent storm. A small boy was walking along the seashore picking them up one by one and throwing them back into the sea. An older man out walking his dog along the beach stopped and asked the little boy, “What is the point of throwing them back into the sea there are millions of them? What difference will it make? The child picked up another starfish and threw it back into the water saying ” I made a difference to that one”.

My question is what are we all going to do in 2017 to make a small difference so that my fledgeling basketball team stand a real chance of inheriting a very different world?

Have a lovely Christmas holiday and a very peaceful and fulfilling new year.

Happy Holidays
Enjoy the Christmas festivities

UN investigators begin taking on ‘rights violations’

UN investigators begin taking on ‘rights violations’, Government hides information on death of Michael O’Sullivan, WRAG cuts will ‘lead to more tragedies’, Activist loses appeal over’ 20 metres PIP consultation, Shocking survey results

How are you all? On good form I hope. As I write, celebrations are beginning to take place in the USA to mark the 25th anniversary of the Americans with Disabilities Act. Our own legislation, previously called the Disability Discrimination Act, will be 20 years old in a few weeks time. This got me thinking about the changes that have occurred in that time, but rather than just focussing on some of the major improvements that have taken place, I’ve been reflecting on some of “smaller” but no less significant things that have changed.

Back in 1995 the smartphone hadn’t been invented, the Blackberry came along in 1997. Email was still in its infancy and letters and memos were the usual way to correspond. The Internet was only five years old, Google launched in 1998, so we visited the library to do our research. We used acetates and overhead projectors for presentations; PowerPoint was an expensive and somewhat unusual alternative. Projection equipment lagged behind the software.

It was quite acceptable for organisations to expect disabled people to provide talks or presentations for free. In fact, for many, it was quite a shock to be asked for money! We often arrived to give a presentation, only to find the venue or the stage itself was inaccessible. Sign language interpreters were a rarity at such gatherings. Audiences were still surprised to see a disabled person providing the speech and were even more surprised when the disabled person’s facilitator did the talking. We talked about disability awareness not disability equality or confidence.

So much has changed, today disabled people are more likely to travel on trains and buses, have access to many more buildings, stand a better chance of getting a job, independent living is seen as a right rather than a luxury. The technologies may have changed, our expectations have certainly increased but as you’ll see from this week’s news, the need to change hearts and minds continues.

Have a good week and here’s to the next twenty years!

News Roundup

UN investigators begin taking evidence in UK on ‘rights violations’
A team of United Nations investigators has this week begun a two-week visit to the UK as part of an inquiry into allegations of “systematic and grave” violations of disabled people’s human rights.

Disability News Service (DNS) revealed in August 2014 that the UK appeared to have become the first country to face a high-level inquiry by the UN’s committee on the rights of persons with disabilities (CRPD).

The committee said last summer, when approached by DNS, that it was not allowed to say whether the inquiry was underway, and that level of secrecy has continued with this month’s visit, with those giving evidence asked to sign confidentiality agreements.

But some details of how the inquiry into breaches of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) is proceeding have emerged.

DNS understands that a team of about six UN staff has arrived in the UK, including two disabled CRPD members, and will visit London, Bristol and Manchester, as well as Scotland, Wales and Northern Ireland.

They are due to meet parliamentarians, disabled people’s organisations, civil servants, representatives of local authorities, academics and senior figures from the Equality and Human Rights Commission.

They will also hear direct evidence from scores of individuals about the impact of government austerity measures, including former users of the Independent Living Fund (ILF), whistleblowers and disabled activists.

Among the issues being raised are believed to be the government’s decision to close ILF; cuts to legal aid; benefit cuts and sanctions, including the impact of the discredited work capability assessment; the severe shortage of accessible, affordable housing; the impact of the bedroom tax on disabled people; cuts to social care; and the rise in disability hate crime.

Anne Pridmore, a disabled activist and former ILF-user who did not sign a confidentiality agreement but was due to give evidence about the impact of the ILF closure, said: “I am going to say that I am pissed off with being messed around. It is affecting my mental health.”

Nearly four months after the ILF closure, she still does not know if she will be able to stay in her own home, and cannot tell the six personal assistants who work for her whether they will soon be out of a job.

She said: “It is all because of this dreadful government who have stopped the ILF and put nothing in its place. Social care is in a terrible mess.”

Pridmore praised the role played by Disabled People Against Cuts (DPAC), which triggered the inquiry after becoming increasingly concerned by the disproportionate impact of the coalition’s cuts on disabled people.

She said she hoped the inquiry “embarrasses the government”, and added: “Hopefully it will give people confidence that something is being done to support them.”

Another disabled activist said: “I’m really happy that someone is listening, yet absolutely horrified by my own and so many other people’s situations and health conditions worsening and the lives being devastated as a result of the closure of the ILF and all the other cuts being made as a result of the ‘welfare reforms’ and the lie of ‘austerity’.

“Some of the stories I’ve been hearing are absolutely shocking and utterly heart-breaking.

“Knowing the UN are investigating is making me feel hopeful, despite everything.

“I really hope the UN will not just gather enough evidence to prove this government is guilty of human rights abuses but that it will then be able and willing to act decisively in order to help bring an end to this cruelty and abuse.”

She also praised DPAC, as well as Inclusion London, which has been closely involved in organising parts of the two-week visit.

A Department for Work and Pensions spokesman said: “We strongly reject the allegations made by DPAC.

“The UK has a proud record of furthering the rights of disabled people, with the principles of the UN convention at the heart of its approach. We continue to spend around £50 billion a year on disabled people and their services.”

The inquiry has taken place under the convention’s optional protocol, which allows individuals and groups who are victims of a violation to submit a complaint to the CRPD about any state, like the UK, that has signed up to both the convention and the protocol.

The deadline for evidence submissions to CRPD is believed to be 31 October.

Government hides information on death of Michael O’Sullivan

The government is refusing to release information that would reveal which ministers and civil servants decided how to respond to the death of a man who killed himself as a direct result of being found “fit for work”.

Disability News Service (DNS) revealed last month that a coroner had demanded government action after an inquest into the death of Michael O’Sullivan, from north London.

The coroner, Mary Hassell, wrote what is known as a prevention of future deaths (PFD) report, and sent it to the Department for Work and Pensions (DWP), because she said there was “a risk that future deaths will occur unless action is taken”.

O’Sullivan had severe mental health problems, including anxiety, depression and agoraphobia, and expressed suicidal thoughts in his ESA application, but medical evidence from three mental health professionals was ignored in the benefits assessment process.

It is believed to be the first and only time a coroner has used a PFD report to draw attention to flaws in the discredited work capability assessment (WCA) system, and the only time a coroner has directly blamed that system for a death.

In its response to Hassell’s report, DWP said it planned to issue a reminder to staff about guidance on such cases, but appeared to make no further suggestions for how to prevent further deaths.

After uncovering the report, DNS submitted a request under the Freedom of Information Act, asking for the name and job title of the most senior DWP civil servant to read and act on the PFD report and the action they recommended, as well as the names of ministers who were shown the report, and the action they took.

In response to the request, a civil servant in DWP’s ESA [employment and support allowance] and WCA policy division confirmed “that we hold information falling within the description specified in your request”.

But he or she said it would be too expensive to comply with the request, because it would take the equivalent of one civil servant more than three-and-a-half days to produce the necessary information.

After receiving that response, DNS asked DWP’s press office to explain why it would take so long to produce such basic information (the case has received wide publicity over the last month, and has been mentioned in parliament and across mainstream media).

A DWP spokeswoman said: “People can ask for a review of the response to their FOI.”

DNS has now asked the DWP to review its freedom of information response.

Meanwhile, two opposition MPs have raised concerns about the Michael O’Sullivan case in parliament.

Their comments came in a debate on the government’s welfare reforms, secured by the Labour MP Carolyn Harris, but which was not attended by a single Conservative backbencher.

Jim Shannon, the DUP’s shadow spokesman on health and equality, said the case had shone a spotlight on the “utter disgrace that is the work capability assessment in relation to people with mental health problems”.

He said: “Despite providing reports from three doctors, including his GP, stating that he had long-term depression and agoraphobia and was unable to work, Michael O’Sullivan was taken off [incapacity benefit] and placed on jobseeker’s allowance.

“At the inquest last year, it was found that he killed himself as a direct result of that decision.

“According to the coroner, Mary Hassell, ‘the intense anxiety which triggered his suicide was caused by his recent assessment by the Department for Work and Pensions as being fit for work and his view of the likely consequences of that’. That cannot be allowed to happen again.”

Eilidh Whiteford, the SNP’s shadow Westminster social justice and welfare group leader, said the death of Michael O’Sullivan was not an “isolated case”.

She pointed to the death of Ms DE, whose suicide in 2011 was the subject of an investigation by the Mental Welfare Commission for Scotland.

She took her own life after scoring zero points in a WCA “made in the absence of an ESA50 [application] form and without any additional information from her clinicians.

“The only information her assessor had about her condition was a single word, ‘depression’, which in her case masked a long and very complicated psychiatric history.

“Both her general practitioner and her consultant psychiatrist considered her unfit for work at the time of her death, even though she had worked for most of her adult life and wanted to go back to work.

“The distress caused by her benefits assessment may have played a role in her suicide. The investigation concluded that there was ‘no other known trigger’ for the events that took place.”

Whiteford said there were likely to be other cases like those of Ms DE and Michael O’Sullivan.

The minister for disabled people, Justin Tomlinson, did not mention the cases of Ms DE and Michael O’Sullivan in responding to the debate.
WRAG cuts will ‘lead to more tragedies’, says Abrahams

Planned cuts to out-of-work disability benefits will lead to more “tragedies” in which disabled people will lose their lives, Labour’s new shadow minister for disabled people has told fellow MPs.

Debbie AbrahamsDebbie Abrahams, a former public health consultant, was speaking as she and fellow opposition MPs
failed in their first attempt to throw out plans to cut support for new claimants placed in the work-related activity group (WRAG) of employment and support allowance (ESA) by nearly £30 a week from April 2017.

Abrahams pointed to the government’s own figures, which showed that the death rate of people on out-of-work disability benefits had increased – in comparison with the general population – from 2003 to the period between 2011 and 2014.

She pointed out that people in the WRAG were 2.2 times more likely to die than the general population.

She said: “The innuendo that people with a disability or illness might be ‘faking it’ or are ‘feckless’ is quite frankly grotesque and belies the epidemiological data.

“Incapacity benefit and ESA are recognised as good population health indicators. I can say that as a former public health consultant. I have experience of this and I have worked in this field.

“The release of the government’s own data, which show that this group are more likely to die than the general population, proves that point.”

Abrahams said the government had “continually maligned, vilified and demonised” benefit claimants, while its use of words like “shirkers” and “scroungers” had led to these terms being used far more often in the media.

She said: “This group of people are vulnerable and need care and support, not humiliation, from us.

“Once again the cart is being put before the horse: make cuts in support and cross your fingers that something turns up for disabled people.”

Priti Patel, the employment minister, said the work-related activity component was introduced by the last Labour government “as an incentive to encourage people to participate in employment”.

She said: “Clearly, we know that that has not happened. We are therefore reforming our approach with DWP, through our jobcentres and work coaches, to support individuals to get back into work.”

She added: “Through all our welfare reforms we have made it clear that we will continue to protect and support the vulnerable.

“That of course includes those who have terminal illnesses or people with progressive illnesses who are unable to work.”

During discussion of a related clause of the bill, Patel added: “It is very easy for Labour members to claim that the [WRAG] measure is about taking money away.

“It is about providing the right kind of support for people with health conditions and disabilities.”

After Labour MP Naz Shah asked her if “the number of people who have committed suicide after sanctions have affected their mental health problems is acceptable”, Patel said that there was “no causal effect at all”.

Neil Coyle, a newly-elected Labour MP and a former director of Disability Rights UK, told Patel: “Some 440,000 disabled people have to pay the bedroom tax… and benefit rates have been frozen, including the vast majority of employment and support allowance benefit paid to disabled people.

“We have also had the change to disability living allowance.

“It is very frustrating to hear ministers continue to claim that disabled people have been protected when they clearly have not.”

Abrahams said the cuts to WRAG payments would affect 500,000 disabled people, according to the government’s own estimates, and she pointed to a “whole host” of other cuts to social security support for disabled people since 2010, as well as cuts to social care.

She said the UK was currently ranked only 19th of 32 European states on how much it spends on disabled people (1.3 per cent of GDP), and that, by 2021, about £640 million a year will have been cut from disabled people’s support through the WRAG cut, while only £100 million a year of that would be spent on “unspecified” assistance to help them into work.

She told the committee: “With this cut to the ESA WRAG support without anything to replace it, the government are condemning more people with disabilities and their families to living in poverty, and I predict, unfortunately, that more tragedies will undoubtedly happen.”

The SNP’s Hannah Bardell said the proposal to reduce the WRAG payment by just under £30 a week was “completely immoral and makes absolutely no sense”.

She said: “ESA claimants have always received a higher rate than those on JSA, because they typically take longer to move back into work, as they face additional barriers.”

She said: “The Conservative manifesto committed to halving the disability employment gap, but it is my party’s contention that the reduction in the ESA WRAG component will in fact present more barriers to those with disabilities who are trying to get back to work.”

The part of the bill that will cut the WRAG payment was passed by the committee by nine votes to eight.

Activist loses appeal over ‘unfair’ 20 metres PIP consultation

An activist has lost his bid to prove that a public consultation on plans to tighten eligibility for the new disability benefit was unlawful, but says his legal case has still exposed the government’s “callous disregard for disabled people”.

The court of appeal ruled this week that the Department for Work and Pensions (DWP) had carried out a proper consultation on its plans to slash the qualifying distance for the higher rate of mobility support from 50 metres to just 20 metres.

Campaigner and blogger Mx Sumpter failed last year in a judicial review of the consultation process, but appealed that decision.

The appeal was heard in July this year, and this week the court of appeal ruled that DWP’s consultation was not unfair or unlawful.

Sumpter, who can only walk a few metres with a stick, and otherwise uses a wheelchair, was assessed as eligible for the higher rate mobility component of disability living allowance (DLA), and uses that to lease a car through the Motability scheme.

But Sumpter fears losing the higher rate entitlement when transferring to the new personal independence payment (PIP), and consequently losing access to a Motability vehicle.

Under DLA, someone is eligible for the higher rate if they cannot walk more than 50 metres, but under the new rules for PIP – which is gradually replacing working-age DLA – this walking distance criteria has been set at just 20 metres.

DWP consulted on the introduction of PIP in 2012 but did not mention its plans to cut the criteria from 50 metres to 20 metres until after the consultation had closed.

Last year, a judge suggested that if the consultation process had stopped at this point, he would probably have found it unfair and unlawful.

But after Sumpter’s judicial review was issued, the disabled people’s minister Esther McVey carried out a second consultation, limited just to looking at the 20 metres measure.

When McVey’s ministerial successor, Mike Penning, published his response to the consultation, he made it clear that the walking distance criteria would remain at 20 metres.

Sumpter’s legal team argued that this second consultation was irrelevant because the decision had already been made.

But the court of appeal concluded that the government had approached the second consultation “with an open mind”.

Lord Justice McCombe, one of the three appeal court judges who heard the case, said in the judgment that Sumpter’s argument would prevent decision-makers in the government’s position from “trying to put right errors in consultation processes that are pointed out to them by looking again at the areas of criticism”.

He added: “As I understand the law, consultation has to be fair; it does not have to be perfect.”

Sumpter, who blogged about the judgment today (Thursday), told Disability News Service: “I am disappointed that we were unable to change anything about PIP, but I am glad that we tried.

“The DWP imposed a cruel trade-off on disabled people in increasing support for some disabilities only by cutting help for those with physical impairments.

“In forcing the government to defend this we exposed their callous disregard for disabled people and our ability to go about our lives.

“It certainly does not fit in to their mantra that disabled people will work their way out of poverty, since for many people the loss of support will mean they can no longer work, or even leave their homes.”

Alastair Wallace, a specialist public lawyer at Irwin Mitchell, who acted for Sumpter in the case, said: “Our client originally challenged the consultation during the creation of the PIP system and while our challenge was unsuccessful, we still believe that the current proposals are unfair.

“We are disappointed by this outcome and our client’s focus will now be to ensure that the new scheme is properly implemented.”

A DWP spokesman said: “We are pleased that the court of appeal has unanimously endorsed the decision of the high court that the consultation process was fair and lawful.

“We remain committed to the full rollout of PIP, a benefit which helps disabled people to live independently by ensuring support is focussed on those who need it most.”

Only five individuals out of the 1,142 organisations and individuals who took part in the second consultation agreed with the government that the walking distance criteria should be set at 20 metres.

Government figures predict that, with the criteria set at 20 metres, the number of people receiving higher rates of mobility support – and therefore eligible for a Motability vehicle – will plunge from 1,030,000 (if DLA had not been replaced by PIP) to just 602,000 by 2018.

They also predict that 548,000 of the 892,000 working-age people who were receiving the higher rate of the DLA mobility component in February 2013 will not receive the enhanced mobility rate of PIP once they are transferred to the new benefit.

Shocking survey results show ‘yawning gap’ between Care Act and real life

Nearly half of disabled people receiving care and support from their local authority say their quality of life has fallen in the last year, despite major new legislation designed to boost their well-being, choice and control.

The survey of 399 disabled people was carried out by the Independent Living Strategy Group (ILSG) – some of whose members were part of the independent living movement in the 1970s – as part of a report assessing the impact of the Care Act 2014 on choice and control.

The group was set up by a broad range of disabled activists and disability organisations concerned about the potential impact of welfare reform and cuts to public services on independent living, and the government’s failure to follow through on its 2010 pledge to monitor the implementation of Labour’s independent living strategy.

Members of the group include Baroness [Jane] Campbell, the leading activist John Evans, the Spinal Injuries Association, Inclusion London, Scope and Disability Rights UK.

Their report was funded and published by In Control, the charity which helped develop the idea of personal budgets*.

ILSG members wanted to find out how local authorities were following “the spirit and letter of the Care Act and its statutory guidance in seeking to optimise choice and control”, which they say is “fundamental” to the Care Act’s “core purpose” of helping people achieve the outcomes that matter to them.

More than 45 per cent of those surveyed said their quality of life had reduced over the past year, including 18 per cent who said it had fallen significantly.

Almost 30 per cent said they had experienced a reduction in choice and control over their support in the past year, while only eight per cent said it had increased.

And nearly 30 per cent of respondents said restrictions had been placed on their use of direct payments or personal budgets.

The report warns that social care spending by local authorities had already fallen by £4.6 billion from 2010-11 to 2014-15 – a real terms cut of 31 per cent – while the government’s imminent spending review had “opened the door to even deeper cuts in the years to come”.

Some councils have introduced restrictions on how disabled people can spend their personal budgets, such as banning them from using them to pay for gym memberships, or for personal assistants to accompany them on outings.

Others have imposed a “cost ceiling”, which means the council will pay no more for independent living than the cost of a residential care placement, despite Care Act guidance making it clear that such practices are unacceptable.

The report calls on central government to ensure that funding to local authorities is “sufficient to enable them to meet their statutory obligations as a minimum, let alone the broader goals and aspirations of the Care Act in respect of prevention and well-being”.

But it also says that there are many things councils can do, “irrespective of their financial position”, to promote choice and control and “strive to meet the letter and spirit of the Care Act 2014”.

Jenny Morris, one of the report’s authors and another ILSG member, said the survey results were “very shocking”.

She there was a “yawning gap between the welcome principles of the Care Act 2014 and what is actually happening to older and disabled people”.

She said: “The whole value system behind personal budgets is incompatible with the massive reduction in expenditure on social care which local authorities are facing.

“There are some local authorities where a significant proportion of social workers and managers are not signed up to the choice and control agenda, but any progress is being made almost impossible by the massive reductions in the funding available.”

She said: “Personal budgets were supposed to enable everyone who needed social care support to have the kind of choice and control that was previously only open to those receiving direct payments.

“Instead, they have been rolled out in the context of a major financial crisis facing adult social care, and the result is not only a reduction in choice but also a decrease in the quality of people’s everyday lives. This is the government’s responsibility and they must act.”

She said ILSG would continue to monitor the state of independent living, including through future surveys.

And she called on councils to “make it clear to government that the current financial climate is incompatible with what they are required to do, according to the Care Act and the statutory guidance that accompanies it”.

Sue Bott, deputy chief executive of Disability Rights UK, added: “Local authorities might argue that it is early days in the implementation of the Care Act, but if you don’t start as you mean to go on then the spirit of the act will never be implemented.

“This report demonstrates, and the calls to our advice line also show, that disabled people are being denied choice and control over how support needs are met and that independent living is being fundamentally undermined.”

*A personal budget is a sum of money allocated by a local authority to meet a person’s care and support needs, while direct payments allow a disabled person to take such a care package as a cash payment

News provided by John Pring at www.disabilitynewsservice.com

IDS announces fitness to work U Turn

IDS announces fitness to work U Turn, Choice and Control plunge, Deaths of Benefit claimants data released, NHS caps on continuing healthcare

So how was your summer? The August Bank holiday is done and dusted and youngsters will be back at school within days. It all goes so quickly!

Two things to tell you. First Sue and I visited the Edinburgh Fringe, we drove up in our motorhome and camped, along with many others, on a site in the suburbs. My good friend Simon Minty and his pal Steve Best returned to the Fringe to celebrate the tenth anniversary of Abnormally Funny People (http://www.abnormallyfunnypeople.com/. The show has new acts as well as some from the original 2005 line up, including Liz Carr and Tanyalee Davis. We had a great night with plenty of laughs and not a little angst. Great to see the new acts and remember how it all began.

One major change since the first show in 2005, we travelled to and from our campsite on a fully accessible scheduled Lothian bus! Couldn’t have done that ten years ago! Nice to sit on the bus at midnight surrounded by other bleary eyed Fringe goers, I felt like a proper commuter for once in my life.

The second snippet for you. I’ve just bought a Batec from Cyclone (http://www.cyclonemobility.com/batec) it’s an electric powered wheel which fixes to the front of my manual wheelchair and turns it into a trike, (see picture) which is capable of speeds of up to 20 kilometres an hour. On my first trip out, with our new dog Crumble, I managed to lose the dog and control of the Batec. I attempted to drive the bike up a short muddy incline in pursuit of the dog but only succeeded in turning the whole thing over. I ended up lying on a muddy track with the bike and chair on top of me. Nothing hurt except, of course, my pride.

Fortunately a group of people, out walking their dogs came to my rescue. They produced the classical opening remark, which I’ve heard so many times before and always baffles me, “Are you alright mate?”. I should have said “Yes of course, I love lying face down in the mud with a wheelchair on top of me!” I managed to restrain myself. Their second question was spot on “What would you like us to do?” They lifted me and the chair upright and then gave me a push up the slope. I thanked them for their kindness and then met Sue coming towards me with Crumble who had returned home having decided she was safer there than with me! Quite right too as it turned out!

Have a great week and take a look at this weeks news.

News Roundup

IDS announces ‘fitness for work’ U-turn that was five years in the making

Work and pensions secretary Iain Duncan Smith appears set to scrap the “fitness for work” test championed by successive Labour, coalition and Conservative governments, but there are fears that its replacement could prove even more damaging to disabled people.

Duncan Smith – in comments not included in a written version of a speech reported by mainstream media – said that employment minister Priti Patel would lead a review of the out-of-work benefit, employment and support allowance (ESA).

And he also appeared to promise that the work capability assessment (WCA), the much-criticised eligibility test for ESA, would be scrapped.

He was speaking just three days before his department finally published complex new figures on the number of people who died after being found “fit for work” following a WCA.

Tory, Labour and coalition governments have repeatedly given their support to the ESA system, since it was launched under Labour in 2008.

But Duncan Smith said, in the speech delivered this week to the thinktank Reform, that there was a “fundamental flaw” at the heart of ESA.

He said: “It is a system that decides that you are either capable of work or you are not capable of work.

“Two absolutes equating to one perverse incentive – a person has to be incapable of all work or available for all work.”

He added: “Someone may be able to do some work for some hours, days or weeks, but not what they were doing previously, when they first became ill.”

Duncan Smith said that ESA – and particularly the WCA – was at odds with the government’s new simplified working-age benefit system, universal credit.

He said: “The more personalised approach under universal credit… sits alongside a work capability assessment which sets the wrong incentives.”

He said a new system should be “better geared towards helping people prepare for work they may be capable of, rather than parking them forever beyond work”, and should be “focussed on what a claimant can do and the support that they need to be able to do it – and not just on what they can’t do”.

Duncan Smith’s comments appear to signal a major retreat from his party’s support for ESA and WCA over the last five years.

And they come less than two months after George Osborne announced, in his summer budget, that from April 2017 he was scrapping the extra financial support for new ESA claimants placed in the work-related activity group, a loss of about £1,500 a year per person, as part of measures that would cut £13 billion-a-year from the social security budget by 2020-21.

If Duncan Smith’s comments do mean an end to the WCA, it would mark a victory for disabled activists who have campaigned for five years for the assessment to be scrapped, despite repeated government insistence that it was fit for purpose.

Over the course of five independent reviews aimed at improving the WCA, Tory ministers have insisted that the WCA must stay.

In the government’s response to the second independent review of the WCA, in 2011, employment minister Chris Grayling said they would “make further improvements to the work capability assessment to ensure it continues to be fit for purpose”.

In his response to the third independent review of the WCA, in 2012, employment minister Mark Hoban said the goal was “continuous improvement”, and added: “We agree that the WCA ‘remains a valid concept for assessing… eligibility’ and that there is no evidence to suggest that the system is fundamentally unsound.”

Early in 2014, Mike Penning, then the minister for disabled people, responded to the fourth WCA review by welcoming the conclusion of the independent reviewer, Dr Paul Litchfield, that the WCA did not need to be scrapped.

Penning said: “In line with the government’s view, he has instead reflected that we need to make further changes but that these reflect our strategy of continuous improvement rather than radical overhaul.”

And just three months before May’s general election, responding to the fifth and final review, Mark Harper, Penning’s successor, insisted that the WCA was “integral to the government’s commitment to ensuring that as many people as are able to do so engage in employment and that those who cannot work receive the appropriate support”.

But now, in this week’s speech, Duncan Smith appears to have concluded that his government was wrong all along to support the ESA and WCA system.

He told the Reform event: “I want to place people at the heart of a system, and make the system work around them, rather than the other way round, as has been the case.

“It was this back-to-front approach which we had inherited, a system that people crashed into, and struggled to figure out too often.”

Disabled campaigner and researcher Catherine Hale, who wrote a well-received review on the failure of the ESA system to increase the number of disabled people in paid work, said: “I’ve always welcomed the idea of an assessment geared to what kind of work a person could do and what support they would need to do it, as Labour was promising before the election.

“But it would have to be based on the real world of employment, not the fantasy world of the current WCA, involving moving empty cardboard boxes and picking up pound coins from the floor.

“However, I’ll eat my hat if this government, after all its policies and rhetoric of blame and punishment towards disabled people, actually intends to perform a U-turn and empower us instead.”

Michelle Maher, of the WOWpetition – which calls on the government to assess the overall impact of its cuts to support and social care on disabled people – said she believed Duncan Smith’s speech signified a plan to cut the number of people receiving out-of-work disability benefits.

She said: “I firmly believe they thought the WCA would reduce numbers and that people were fraudulently claiming or making a ‘lifestyle’ choice.”

But when ministers realised this was not the case, she said, they decided to scrap the WCA and replace it with something “innocuous but deadly”, with more sanctions and even more “frightening and stressful” for ESA claimants.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “What Iain Duncan Smith has said is interesting, but the mind boggles about what he is going to replace it with. He is a slimy snake and I wouldn’t trust him.”

Nick Dilworth, co-founder of the New Approach campaign group and welfare benefits specialist forthe website ilegal, said the speech had left many people “bewildered”.

He agreed that Duncan Smith appeared to have announced plans to scrap the WCA, but said he had provided no clue as to what he would replace it with.

He said: “I would warmly welcome reform if it was in the right direction.”

But he added: “I think it would be an absolute crying shame for that opportunity to be lost by Iain Duncan Smith spinning forth a load of rhetoric to get people onside and then doing the absolute reverse. That is what I think he will do.”

Dilworth said he believed that Duncan Smith would make it harder for disabled people to enter the support group of ESA – or the equivalent under universal credit – and said: “When he talks about reform, I am all for that, but I just don’t trust him.”

John McArdle, co-founder of Black Triangle, said: “IDS’s latest pronouncements are a signal that a fresh attack on the fundamental human rights of sick and/or disabled people is in the preparatory stages.

“You can’t help disabled people by impoverishing them through brutal austerity cuts as your guiding policy.

“IDS has realised that his disastrous social security cuts have failed to ‘make savings’, even on their own terms, so now he is fumbling around seeking new ways to justify further assaults on our welfare state.

“He’s a proven liar and is both dangerous and breathtakingly incompetent to boot.

“If the UK was still a civilised society – in a week when the DWP has been forced to reveal just how many thousands of sick and/or disabled people have died in abject penury after unjustly being found fit for work – IDS would have been summarily dismissed.

“Dying in poverty and neglect is now just a fact of life in what remains of our social security system, thanks to this man. It is intolerable.”

Disabled activist Caroline Richardson, from the Spartacus online campaigning network, said: “The evolution of universal credit has shown it to be now a system of sanctions, where a person has to continually increase their hours/wages under threat of not just losing the ‘amount a person needs to live on’ but also their housing and other benefits.

“Abolition of ESA reduces the ‘indicator flag’ that clearly differentiates people. I fear that assessments will increase in frequency, and be linked to the number of hours the assessor believes a person could work.

“Anyone with any capacity at all would be effectively on jobseeker’s allowance, even if their claimant commitment obligation for hours to be worked is very low.”
Choice and control have plunged under Tories, say government figures

The government is facing an embarrassing slump in one of the key measures of the success of its disability strategy: the proportion of disabled people who feel they have choice and control in their lives.

The results were included in the latest report from the Office for Disability Issues (ODI) on progress “towards the vision of disabled people living fulfilling lives”, through the Fulfilling Potential disability strategy.

They will be particularly embarrassing for the government, because “choice and control” is one of the strategy’s six major themes.

When the Office for National Statistics began collecting the figures, in 2008 – two years before the Conservative-led coalition came to power – it found that 76 per cent of disabled people said they frequently had choice and control over their lives.

But the new report, published on 21 August by ODI – but not publicised with a press release – showed that figure plunging to just 65 per cent last year, a fall of more than 14 per cent (or 11 percentage points) in just six years.

Three years ago, the government said it wanted its Fulfilling Potential strategy to “tackle barriers to realising aspirations and individual control” for disabled people”.

A progress report published last year said that the proportion of disabled people who believed they frequently had choice and control over their lives had been fairly stable from 2008 until 2012, but started to fall in 2013.

Disability News Service has now asked the Department for Work and Pensions for more detail on how the proportion of people enjoying choice and control changed between 2009 and 2012.

The figures are likely to add fuel to concerns that the Tory austerity programme – including cuts to out-of-work disability benefits, disability living allowance cuts and reforms, the introduction of the bedroom tax, cuts to social care, and the closure of the Independent Living Fund – has damaged disabled people’s chances to achieve independent living.

Other figures in the report will also raise concerns, with the proportion of disabled people who said their employer was very supportive falling from 57 per cent in 2013 to 53 per cent last year.

And the proportion of disabled people who said their work colleagues were very supportive also fell, from 65 per cent in 2013 to 59 per cent in 2014.

Just 40 per cent of disabled people said the protection provided by the Equality Act was effective (a slight rise on the 39 per cent of 2013).

There was also a sharp drop in the proportion of disabled people who said they had no difficulties with public transport, from 74 per cent in 2013, to 67 per cent in the latest report.
Long-awaited deaths stats ‘do not tell the whole story’

The long-delayed release of government figures on the deaths of benefit claimants has added fuel to years of concerns about the impact of aggressive welfare reform on sick and disabled people.

The Department for Work and Pensions (DWP) released two sets of data today (Thursday), one showing mortality statistics for out-of-work disability benefit claimants, and another showing death rates for all out-of-work benefit claimants.

Activists had been calling on DWP to publish updated statistics since November 2012, in an effort to prove that the work capability assessment (WCA), the eligibility test for employment and support allowance (ESA), was so damaging that it was causing deaths.

The information commissioner finally ordered DWP to release the figures after an appeal by Mike Sivier, a freelance journalist and carer who runs the Vox Political blog.

But many activists and commentators warned that the figures released by DWP today “do not tell the whole story”, and would require detailed analysis before any conclusions could be reached.

The figures reveal that, of the two million people who had gone through a work capability assessment and had received an ESA decision between 1 May 2010 and 28 Feb 2013, nearly 41,000 had died within a year of that decision.

The reports also show that, between December 2011 and February 2014, 81,140 people died while claiming ESA or incapacity benefit (IB).

And 2,650 ESA and IB claimants died soon after being found “fit for work” as a result of an assessment.

Another 7,200 died after being placed in the ESA work-related activity group (WRAG), for claimants the government had decided were well enough to move back towards work.

Other figures show age-standardised mortality rates (ASMRs), which allow for comparisons between the proportion of those dying while in different ESA groups and the general population.

These figures show that, in 2012, those placed in the work-related activity group (WRAG) of ESA were more than twice as likely to die (481.1 of every 100,000 people) as the general population (238.5 of every 100,000 people).

The following year, in 2013, the figures were 532.4 per 100,000 people for the WRAG and 240.4 for the general population.

DWP insisted that it was not possible to assume any “causal effect between benefits and mortality” from the “isolated figures” it had published, which “provide limited scope for analysis”.

It insisted that “nothing can be gained from this publication that would allow the reader to form any judgement as to the effects or impacts of the WCA”.

Despite this, work and pensions secretary Iain Duncan Smith had announced – just three days before the figures were published – that he wanted to scrap the WCA, and said there was a “fundamental flaw” at the heart of the ESA system.

Disabled People Against Cuts (DPAC) said the figures showed the WCA was “not fit for purpose”, although it would take time to analyse them properly.

DPAC’s statement said the figures “do not tell the whole story”, as they ignore those disabled people found fit for work but unable to claim jobseeker’s allowance because of its strict conditionality.

DPAC said the figures also ignore the thousands of disabled people sanctioned every month; those disabled people “portrayed as scroungers by the media”; and the “suffering and the humiliation of disabled people who have to prove their impairment/long-term health issues over and over again to DWP staff who don’t believe them”.

The disabled social affairs journalist Frances Ryan wrote in the Guardian that death had become part of Britain’s benefits system.

She said: “That is not hyperbole but the reality that the stress caused by austerity has led us to.

“Shredding the safety net – a mix of sanctions, defective ‘fit for work’ tests, and outright cuts to multiple services – has meant that benefit claimants are dying; through suicide, starvation and even being crushed by a refuse lorry when a 17-week benefit sanction forced a man to scavenge in a bin for food.”

Philip Connolly, policy and development manager of Disability Rights UK, said: “It is not just the charities but the British Medical Association and the Royal College of Nursing who have deplored this medical test for fitness for work.

“Now the evidence of the cruelty and stress involved in this test can be seen by everyone else too and not simply by the families of the dead. We need a completely new approach.

“This time it must be one that starts by supporting those who want to work to exercise their right to work – with encouragement and evidence-based support, not threats of poverty and inadequate programmes.

“And it must be one that disabled people, our representative organisations and health, social care and vocational rehabilitation professionals view as acceptable.

“It must be evidence-based. It must link assessment of needs to support. It must be fair.”

Frank Field, the Labour MP and the new chair of the Commons work and pensions select committee, said the figures were “distressing”, but added: “The key factor is whether the number of deaths are above what would normally be expected from claimants not deemed fit for work.”

He said he had written to Sir Andrew Dilnot, chair of the UK Statistics Authority, to ask if he would answer this and other questions, and “take this analysis further”.

The grassroots campaign group New Approach, which is dedicated to replacing the “toxic” WCA with a fairer system, said it was too early to conclude what the figures really showed, and added: “We will go through today’s figures in detail over the coming weeks and respond to them by issuing a further statement when our findings are complete.”

Among others warning not to read too much into the figures was Ben Goldacre, a doctor, academic, campaigner and writer, whose work focuses on uses and misuses of science and statistics.

He said: “Fit for work assessments may well harm people. These DWP figures do not give us the answer.

“Journalists and politicians claiming they can see any information one way or another in these figures are displaying their ignorance and wishful thinking.”

He said that the figures which could answer this question would be ASMRs for people on IB or severe disablement allowance who had been reassessed through a WCA and found fit for work.

Kate Green, Labour’s shadow minister for disabled people, said ministers had been trying to suppress the figures for more than three years.

She said: “The delay and the lack of transparency in publishing this information is a disgrace and has caused huge distress to the families and friends of those affected.

“These figures should be a wake-up call for the government. Ministers need to focus on sorting out the assessment process so that everyone can have confidence in it, and providing support for disabled people who can work in order to help them do so.”
NHS caps on continuing healthcare pose new threat to former ILF-users

Disabled people with complex health needs are at increasing risk of being forced into nursing homes by cash-strapped NHS commissioners unwilling to fund packages to support them to live independently in their own homes, campaigners fear.

At least two clinical commissioning groups (CCGs) – Mid Essex and Enfield – have already introduced rules that refuse to fund home-based packages of support for those eligible for NHS continuing healthcare if the cost is more than 10 per cent above the cost of a place in a nursing home.

Disability Rights UK (DR UK) has raised concerns that such moves to impose an artificial cap on home support packages could impact on former users of the Independent Living Fund (ILF), which closed at the end of June.

Faced with responsibility for an influx of service-users with high support needs, it is feared that local authorities will argue that many former ILF-users should instead be funded by the NHS.

If CCGs then cap the cost of support packages, it could force some ILF-users into nursing homes.

NHS continuing healthcare was introduced in 2007, and refers to packages of ongoing care for people with complex health needs that are arranged and funded solely by the NHS.

Earlier this month, the board of Mid Essex Clinical Commissioning Group approved new guidelinesthat allow new patients to receive NHS continuing healthcare at home only if that support costs a maximum of 10 per cent more than equivalent care in a nursing home.

A consultation on the plans saw only 22 per cent of 75 respondents backing one of two options to impose a cap.

Responding to the consultation, the user-led Spinal Injuries Association (SIA) warned that such a policy could breach both article eight – the right to a private and family life – of the European Convention on Human Rights (ECHR), and article 19 – on living independently – of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

SIA said the policy “strongly implies that the individual will be physically placed in a residential care home against their will”, which would be a “fundamental and material interference with their right to a private life”.

It pledged to support members who challenge the policy in the courts.

The SIA response added: “In summary, SIA wishes to make it clear that it rejects as unacceptable the proposals to restrict the cost of ‘care at home’ packages, and will support its members in opposing any attempts to coerce the CCG’s spinal cord injured patients into residential care.”

When asked if the policy would lead to fewer disabled people with high support needs living independently, a Mid Essex spokesman said: “This policy is intended to ensure that NHS continuing healthcare provision in mid Essex is an equitable process for all residents.”

He said Mid Essex had “sought legal advice prior to the consultation taking place to ensure we are meeting our legal obligations”.

Asked if the policy could impact on former ILF-users, he said: “The policy applies to all new patients.”

Enfield CCG has already introduced a similar policy for people assessed as eligible for NHS continuing healthcare, and will now “only consider the provision of ‘care at home’… where the total cost of providing care is within 10 per cent of the equivalent cost of a placement in an establishment”.

Enfield’s policy was introduced in October 2013 and is currently being reviewed.

A spokeswoman for Enfield CCG said that so far the policy had not been invoked, as colleagues had managed to “look at each individual’s needs and have worked the package around what is best for them”.

But she said the policy could still be invoked in the future, because Enfield CCG was a “financially-challenged organisation”.

She said Enfield does not “have any concerns” that its policy could breach the ECHR or the UNCRPD, and believes it is consistent with the government’s framework on NHS continuing healthcare.

But Sue Bott, deputy chief executive of DR UK, said she was “very concerned” that CCGs had begun to introduce such policies.

She said: “I think we will be looking to find out as soon as we can how many CCGs have got this policy.

“It is a direct threat to disabled people and there is a real worry that people could end up in a nursing home against all the principles of independent living.

“It is just not acceptable for people to be institutionalised, which is what it amounts to, in this way against their will.

“We will be campaigning and getting our allies to ask questions in parliament and we will be seeking some reassurance from ministers that disabled people are not going to face this threat.”

Bott said the new policies posed a threat to former ILF-users, as some local authorities were now referring them to CCGs for NHS continuing healthcare because of their own lack of resources.

Linda Burnip, a co-founder of Disabled People Against Cuts, said policies such as those in Enfield and Mid Essex were “very regressive” and were “taking disabled people’s rights to independent living backwards, basing it not on independent living but purely and simply on cost”.

But she said it was very difficult to know what impact these and other such policies would have on people’s care in the future, until the results of the chancellor’s spending review in the autumn.

News provided by John Pring at www.disabilitynewsservice.com

Winners and Possible losers

Last week was a pretty good one. I attended two evening events the first launched the “OneVoice for Accessible ICT Coalition” a programme aimed at making IT more accessible to disabled people. The other arranged by the Employer’s Forum on Disability demonstrated real progress regarding the portrayal of disability on television. Clips from Eastenders and Hollyoaks plus interviews with producers and actors showed how far things have moved over the last decade.

Sadly the old adage that we take two steps forward and then one back seems true based on this weeks clippings. The Equality Bill has been enhanced after vigourous campaigning but entitlement to disability benefits seems to be more difficult to get based on the latest figures. Drop me a note if you want more information.
Equality bill amendments ‘will transform rights’

Campaigners and disabled peers say two key sets of government amendments to the equality bill will transform disability rights in employment and education.

One series of amendments will tighten the ban – added to the bill at an earlier stage – on employers using health questionnaires to discriminate against job applicants with hidden impairments.

The amendments, added during the bill’s committee stage in the Lords, mean there will be fewer exceptions to the ban and will allow the Equality and Human Rights Commission to enforce the new laws.

The mental health charity Rethink said the amendments “could mark a turning point in equal opportunities”.

They were also welcomed by the disabled peers Lord [Colin] Low and Baroness [Jane] Campbell, who said she felt “very strongly” about the amendments, “having gone through many interrogations from interview panels in the past”.

Liz Sayce, chief executive of RADAR, which has campaigned for more than ten years to outlaw the questionnaires, said banning them was “probably the single biggest difference and improvement that could be made through the equality bill” on employment of disabled people.

She said: “It will build confidence amongst people with HIV, mental health conditions and other hidden disabilities that they will be judged fairly, on merit.”

The second set of amendments lays out new measures to give disabled pupils the right to support at school through access to auxiliary aids and services – such as computer technology to help visually-impaired pupils, or adaptive keyboards – another key, longstanding demand of disability rights campaigners.

Education secretary Ed Balls had pledged to bring in such laws after they were recommended by the Lamb inquiry on special educational needs.

Baroness Royall, for the government, said it was “right and proper that all members of our society…have access to education and the educational aids they need in order to thrive as individuals and to participate as full members of our society.”

The disabled peer Baroness [Rosalie] Wilkins said: “Too many disabled children face barriers to participation in learning and school life, because if they do not have a statement of special educational needs, they have no enforceable entitlement to extra support.”

She said the amendments would “provide many thousands of disabled pupils, and their parents, with the confidence to get the practical support they need to take part in school life”.

The amendments were also backed by Lord Low and both the Liberal Democrats and Conservatives.

Caroline Ellis, RADAR’s joint deputy chief executive, described the new measures as “a big gain” and “a very practical way of boosting inclusion”.
Figures show thousands missing out on employment support

New government figures have confirmed that only a small proportion of people applying for out-of-work disability benefits are “passing” the strict new test, the work capability assessment (WCA).

The government claimed the figures showed that “thousands of people are now moving towards work rather than being left to claim sickness benefit”.

But of the 326,500 people who completed new claims between October 2008 and May 2009, only about 59,000 (18 per cent) were found eligible for the new employment and support allowance (ESA). Of these, about 18,000 (5.5 per cent) do not have to take part in work-related activity.

More than two in five (about 135,000 people) were found to be “fit for work” and so ineligible for ESA and the personalised support it would have entitled them to through the government’s Pathways to Work programme.

The remaining 133,000 claimants stopped claiming before completing the WCA.

Those who “fail” the WCA are placed on jobseeker’s allowance (JSA), and receive £25 less a week, although the Department for Work and Pensions said some JSA “customers” with health conditions can volunteer to be “fast-tracked” to receive “much more intensive help and one-to-one support to improve their employability”.

Campaigning organisations have repeatedly warned that the WCA is inflexible, riddled with errors and fails to reflect disabled people’s daily lives.

Neil Coyle, director of policy for Disability Alliance, said: “We are aware that too many disabled people are being misassessed in an overly rigid system and failing to access the support arrangements that could help them find work.”

But he said he was “hopeful” that the current government review of the WCA would “lead to a more effective system able to identify the needs of disabled people”, with Pathways to Work offered to more people.

Jonathan Shaw, the minister for disabled people, said the government was reviewing the WCA to “see where improvements and changes need to be made to ensure that it is working as it should be”.

The government will start rolling out the WCA to existing incapacity benefit claimants this October. It is also reviewing the effectiveness of Pathways and aims to publish proposals this spring.

The new figures also reveal that, by the end of November 2009, 8,800 claimants had completed appeals against a decision that they were ineligible for ESA, and 3,300 were successful (37.5 per cent).

Previous figures suggested less than a third of claimants were winning their appeals.

News provided by John Pring at www.disabilitynewsservice.com