What price do you put on a human life?

Since I last wrote, we’ve had the Manchester bombing, the London and Westminster Bridge killings, a general election and most recently the fatal attack on Muslims in Finsbury Park and the terrible fire at Grenfell Tower.

There has been much soul-searching over the murderous terrorist atrocities which killed and permanently disabled so many innocent people in London and Manchester. Were they preventable? Could more have been done to avert them? Sadly the conclusion seems to be that it is almost impossible to stop murderous individuals from blowing themselves up, running people over after hiring a truck or running amuck with knives. Nevertheless, the government will speedily invest millions of pounds in anti-terrorism measures and rapidly deploy new legislation to counter the perceived threat.

But what about the response to the tragedy of Grenfell Tower and the needless loss of so many innocent lives? It is beginning to look like this horror was largely preventable, and the warnings were ignored or dismissed as alarmist.

Grenfell Tower residents had repeatedly raised concerns regarding the safety of their building; the local authority chose to ignore the warnings. A refurbishment programme primarily designed to “beautify” the tower block to make it less of “an eyesore” for the wealthy homeowners living nearby used cheaper cladding which it now seems clear did not meet fire safety standards. A Coroners report based on a similar fire in a tower block in Southwark made a number of fire protection recommendations none of which have seen the light of day, despite repeated calls from an all-party parliamentary committee on fire safety. As if the devastating consequences of the fire itself weren’t enough Kensington and Chelsea’s response to the disaster was utterly shambolic and dismissive. Local people had to rally round and provide for each other, and days after the fire there was still a lack of leadership, coordination and organisation. Even the Prime Minister chose to meet exhausted fire crews rather than mingle with the devastated survivors of the fire.

One of the conclusions I draw from this terrible, preventable tragedy is that if you’re poor, or an immigrant, an ethnic minority, disabled or old, your life is worth less when compared to those who are not from those groups.

One commentator put it rather well; “The Shard is a tower block if it caught fire would there be such catastrophic consequences”. I think we know the answer to that question.

Picture of high rise buildings in London
Luxury high rise buildings in London

Another commentator remarked when discussing the Grenfell Tower fire that “housing for the poor will always be poor housing”. Buildings constructed for people who are more comfortably off tend not compromise on safety standards; whereas penny-pinching, shoddy maintenance, avoidance or enforcement of building regulations and delay are the name of the game for those dependent on social housing.

A fitting epitaph for all those who died would surely be that lessons are learned. The government should act swiftly to strengthen fire safety regulations just as they would have done if this had been an act of terrorism. The public enquiry needs to publish its findings as quickly as possible, and if required the government should bring forward new legislation without delay just as it would have done if this disaster had been caused by a terrorist act. The government should spend whatever is required to ensure that people are kept safe just as they do when we are threatened by terrorism. If these things come to pass then those who died will not have died in vain.

What price independence?

Those of you who know me reasonably well will know that I’m a bit of a petrol head. I simply love driving! I know that’s not terribly cool theses days given the effects on the planet, but I blame my obsession on the fact that I’m a wheelchair user and as a result, I love the freedom that driving gives me.

In my time I’ve driven some pretty incredible motors. My journey started way back in the 1960’s with the appropriately named Tippen Delta 2 a three-wheeled invalid carriage supplied by the then Ministry of Health which preceded the Motability Scheme. I managed to overturn my aptly named “Tippen” on several occasions. These vehicles were primitive, unreliable and eventually banned from Britain’s roads in 2003 as they were deemed to be too dangerous! Those of us who survived this unique driving experience used to wonder whether this was a secret initiative designed to reduce the population of disabled drivers!

Picture of a Tippen Delta 2 invalid carriage
Tippen Delta 2 1962

After seven years of crashing around in invalid carriages, I bought my first “proper” car a used two-seater sports car the MG Midget; a Porsche-engined VW Beetle followed, then a Saab Aero. I ended this extravagant period of my life with a BMW 5 Series, a Mercedes E class estate and finally a Range Rover!

The invalid carriage was an ill-equipped, unreliable and dangerous vehicle but I loved it. I still remember the pleasure and excitement of being able to go out when I pleased; I could go where I wanted and most of all I had control and choice. The Range Rover provided all of the same benefits but with leather seats!

As I’ve got older and my physical abilities have waned I’ve moved from walking on crutches to using manual wheelchairs and now to powered wheelchairs. This physical deterioration has had a profound effect on what vehicles I am now able to drive. The observant among you will quickly realise that you can’t fit a large powered wheelchair into most saloon cars. My solution has been to use wheelchair accessible vehicles (WAV) supplied via the Motability Scheme. So the wheel has turned full circle!

MG Midget Sports Car
MG Midget Sports Car

The Motability Scheme is a far cry from the old invalid carriage days and has provided complete driving solutions to hundreds of thousands of severely disabled people for years; incidentally, they celebrate their fortieth anniversary in May.  I’ve variously leased through the Scheme a Chrysler Voyager, a VW Transporter and currently a VW Caddy. All accomplished, reliable vehicles but not quite BMWs although the costs including adaptations are not that different.

For many severely disabled people, their only real option for independent travel is the Motability Scheme, but the government’s recent changes to the benefits system are having a profound negative effect. Since 2013 51,000 people have had to return their Motability vehicles because they failed to satisfy the new criteria used to qualify for higher rate personal independent payments (PIP). It is estimated that the final figure will be closer to 150,000 returned vehicles. What lies behind these numbers are individual human stories. Disabled people are potentially losing their jobs because they can’t get to work, being prevented from seeing family and friends, stopped from going on holiday, reliant on others for medical appointments, shopping and leisure pursuits.

The Motability Scheme plays a vital role in ensuring that disabled people can live independently. For many of those who use the Scheme, it is the only way they can afford to lease an appropriate vehicle for their level of impairment. The draconian measures being used to reduce the benefits bill are having a devastating and disproportionate impact on the lives of many disabled people, for those who rely on PIP in order to fund their personal transport, the future looks very bleak indeed.

It’s one thing to have less money to spend, most of us have been through that,  it’s quite another to also lose your ability to live independently.


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

Surprises and tragedy in equal measure.

At long last, the summer has arrived! Time to take off my fleece!

What an extraordinary few weeks it has been. First, we had all the drama of the Brexit vote and then all the carnage that followed. A new non-elected Prime Minister and Philip Hammond appointed as Chancellor of the Exchequer, Boris Johnson inflicted on the rest of the world as our Foreign Secretary with Nigel F and Michael Gove nowhere to be seen. I don’t have the time or the space to update you regarding the state of Her Majestys Opposition! Alongside all of this mainland Europe and the USA, witnessed multiple shootings and stabbings, some clearly connected to terrorism others attributed to mental health issues.

More recently in Japan 19 learning disabled people were murdered, and 25 others were seriously injured by Satoshi Uematsu, a 26-year-old care worker who gained access to the residential setting where they lived. It came to light shortly after these murderous attacks that Uematsu had a history of mental health difficulties. Uematsu declared

A table with flowers on it outside the residential care setting in Japan.
A person places flowers on a table outside the care home.

his hatred for the 800 million people with disabilities across the world, saying they should be exterminated, and the cost of caring for them should be spent on other things. It is alleged that he supported Adolf Hitler’s views on eugenics and had written to Japanese officials volunteering to kill disabled people as they were a drain on society.

These horrific incidents have done nothing to enhance the way the public views disabled people, particularly those who rely on the state for their support or those who are trying to manage a complex mental health condition. Now more than ever we need to reinforce the fact that most people with mental health conditions are not violent and that disabled people, in general, can and do make significant and valuable contributions to our society.

Finally just an update; as most of you know, I’ve reunited with my old chum Simon Minty and together we are having a lot of fun putting together a regular podcast. If you’d like to take a listen please visit us at  Phil and Simon Show

And after, all that here are some news stories that might interest you. As always these are provided by John Pring www.disabilitynewsservice.com

Embassy vigil will show solidarity with Japanese victims

Government’s hate crime plans unforgivable failure on disability

Rebooted “Disability Confident’ shockingly bad

Concern over Mordaunts ‘troubling’ appointment as Disability Minister




Phil and Simon Show

Simon preparing to record the show
Simon preparing to record the show

It seemed inevitable that one day there would be a podcast of me chatting with my buddy Simon Minty about all things disability. Simon and I have been having these conversations for nearly twenty years, until now, unrecorded, while working, travelling or just hanging out together.

We have very different backgrounds, we are from different generations, we have different politics and contrasting comfort zones. We both share a commitment and passion for equality, fairness and social inclusion of disabled people and have spent many years working to achieve it or at least see some progress.

The great thing about our discussions are that we know one another so well and respect each other so don’t have to pull any punches now. Sometimes we’re considered, at times, we just shoot from the hip. We can make each other laugh and still, after all, this time, make the others jaw drop with a single comment.

We have already recorded two shows, and they are available online. We’ll continue to record one each month until we run out of things to say. Which means they’re going to keep coming for quite a while… we will mix it up from time to time and invite some guests on the show.

Phil getting ready to record
Phil ready to record

Our latest show discusses the merits or otherwise of being disabled in the US compared to the UK. Is it just about attitude? Do you tip if someone is providing a service related to your disability? Why do some disabled people not use equipment that would improve their life? And if disability kit can ever be cool? And if so, who to and where do you find it?


You can subscribe, follow us, get in touch, etc. with via the various links below.

Phil and Simon Show on Itunes

Phil and Simon Show on Audio Boom

Phil and Simon Show on Twitter

Phil and Simon Show on Facebook

You can email us at philandsimonshow@gmail.com

Harper backing for mental health sanctions, In-work discrimination and hardship, LibDem bus horror, Greens agree to debate assisted dying, NHS wasted years, Trailblazers are back

Hello once again. Just after a pleasant bank holiday and now it’s nearly time to vote! I don’t know about you but I will be glad when it’s over. If I hear the terms ‘hard working families’ or ‘our country’ one more time I’m going to take a hammer to whichever piece of kit is broadcasting this platitudinous rubbish. I feel better now!

Talking of broadcasting kit I’ve recently been involved in a number of webinars and podcasts. (Here are a couple of links Abnormally Funny People Podcast and Disability Now Podcast).

A lot of fun to do and a great way to maximise the use of time and the technology that is out there. I’m a big supporter of tech, as many of you know, but there is a downside.

I joined a webinar recently that was providing a training course on how use a particular piece of software. The presenter was based in Canada and about a hundred people, from all over the world, were tuned in. The hour-long session was entertaining and informative and I watched and listened while sat in my pyjamas! (My camera was turned off by the way). A really efficient use of my time and a great way to learn. On reflection I’ve now realised that the session was completely inaccessible to sight impaired people. There were lots of slides and real time demonstrations all of which were visual.

The podcasts were perfectly accessible to sight impaired people as they relied primarily on audio but deaf people were excluded unless the presenters decided to provide a script. I’m not sure that many of those using these communication tools have got their heads around these issues. So it’s another example of two steps forward and one step back for disabled people. Any thoughts?

Enjoy the news and enjoy the post election shenanigans that are sure to follow.

News Roundup

ELECTION 2015: Harper suggests backing for mental health treatment sanctions

The Tory minister for disabled people appears to have accidentally admitted what many disabled activists feared: that a Conservative government would cut the out-of-work benefits of people with mental health conditions if they refused treatment.

In a debate broadcast on local radio, Mark Harper strongly suggested that people with mental health problems would be among the group with “long-term yet treatable” conditions who could be sanctioned if they refused treatment.

The pledge to review whether such sanctions should be introduced is included in the Tory manifesto, under a promise to “review how best to support those suffering from long-term yet treatable conditions, such as drug or alcohol addiction, or obesity, back into work”.

It adds: “People who might benefit from treatment should get the medical help they need so they can return to work.

“If they refuse a recommended treatment, we will review whether their benefits should be reduced.”

But the party has refused to confirm that people with mental health conditions would be among this group facing potential sanctions.

Disabled activists have described the plans as “wild, stupid”, “unconscionable”, and “highly dangerous”, while the Tory MP Dr Sarah Wollaston, who chaired the Commons health select committee in the last parliament, has said on Twitter that sanctions linked to medical treatment would be “unethical”.

But this week, at an election hustings event hosted by the BBC in Harper’s Forest of Dean constituency, the minister for disabled people appeared to confirm that people with long-term mental health problems would be among those facing sanctions.

He told the audience: “For people who are long-term sick… sometimes people simply can’t return to work and we need to make sure we support them, which is why we have systems in place.

“The most beneficial thing we can do though is to deal with the disability that they have got and particularly with those people with mental health problems, most of which are treatable, is to get the support in place so they can get back to work, which is what most of them want to do.”

So far, neither Harper nor the Conservative party have been willing to comment on Harper’s apparent blunder, which came after Tory ministers repeatedly ducked out of opportunities to defend their disability-related policies and their record over the last five years.

Last week, Harper himself cancelled an appearance on Newsnight, when he was due to debate benefit reform with representatives of Labour and the Liberal Democrats.

And this week, employment minister Esther McVey was reported to have pulled out of a planned live interview with the radio station LBC.

The party has said it would cut social security spending by a further £12 billion a year if re-elected, but has yet to say how it will find most of these “savings”.

Disability News Service has already reported how the Tories declined invitations to take part in three national disability-related hustings events organised by the Alliance for Inclusive Education,Learning Disability Alliance England, and the British Deaf Association.
ELECTION 2015: Coalition has led to in-work ‘discrimination, harassment and hardship’

Disabled workers have faced deteriorating attitudes from employers, cuts to their legal protection, and “disintegrating” long-term job prospects under the last four years of the coalition government, according to new research.

The study by the Public Interest Research Unit (PIRU), a small research charity, concludes that the unpredictability of zero hours contracts and higher levels of workplace ill-treatment is having “damaging effects” on the health of disabled workers.

It also says that unlawful discrimination, including harassment and unlawful dismissal, appears to have been increasing, and concludes that “being disabled appears to have, in general, put disabled workers at particular risk of being made redundant or otherwise dismissed”.

The study says its research appears consistent with “widespread and frequent breaches of anti-discrimination laws; and with there having been a general increase in such breaches during the last four years”.

In 15 of the public, private and voluntary sector organisations examined for the study, the proportion of disabled people in their workforce had fallen since 2012, while it rose in just seven.

Government rhetoric about disability benefit cheats appears to have “spilled over” into the workplace, with some line managers now regarding impairments (particularly mental health conditions) as exaggerated or “faked”, the study adds.

One respondent said that the coalition’s weakening of the public sector equality duty meant disability equality training was now “all but non-existent”, with recruitment of disabled staff lower than it was before 2010.

And public sector spending cuts appear to have led to a decreased willingness to make adjustments for disabled staff, with disability equality now sometimes regarded as an unaffordable “luxury”.

Some public sector workers who had been made redundant, or whose jobs had been outsourced, “appear to have moved from situations in which there was reasonable support for workers with disabilities to private sector ones in which there was little or none”, the study adds.

The study also suggests that the government’s repeated reference to legal protections as “unnecessary red tape” could be leading some employers to take these obligations less seriously.

The study identifies 22 significant cuts to equality and employment law protections since 2010, which are starting to have “adverse impacts” on disabled workers, who are finding it “hard or impossible” to enforce their remaining rights, partly because of the introduction of fees for employment tribunals.

The study collected information from 137 disabled workers and looked at documents from 141 public sector organisations, and was produced for the grassroots campaigning organisation Disabled People Against Cuts (DPAC).

Debbie Jolly, a member of DPAC’s national steering group, said: “While more research is needed, the initial findings here show a woeful regression of support for those disabled people able to seek work.

“The recent cap on Access to Work adds to this, exposing the coalition government rhetoric to the stark realities and discriminations disabled people face.”

Rupert Harwood, the report’s author, said: “The study suggests that disabled individuals have been the hardest hit in work as well as out of work.”

He points out that his findings should be used as the basis for only “tentative conclusions” about UK disabled workers as a whole because his samples of workers and organisations were not designed to be representative.

But he added: “However, despite these limitations, it seems fairly safe to conclude… that many disabled workers have experienced considerable disadvantage and hardship which has been in part at least the consequences of coalition government policies.”

The Conservative party failed to respond to a request for a comment in time for the Disability News Service deadline.

But Kate Green, Labour’s shadow minister for disabled people, said the report made “depressing reading”.

She said: “It shows the work chances and experiences of disabled people went backwards under the Tory-led government, thanks to the scrapping of employment rights, lack of support from important programmes like Access to Work, and a rising climate of hostility towards disabled people, fed by a negative language that focused on ‘scrounging’, which has influenced employer attitudes.”

She said Labour “believes disabled people have the right to decent work and the support they need to do so”.

She said: “We’ll introduce a specialist programme of work support to replace the failing Work Programme that’s got just 10 per cent of disabled people into jobs.

“We’ll take action to ensure that Access to Work supports disabled people to work and to progress in employment.

“We’ll scrap fees for employment tribunals, and ensure that disabled people’s rights are respected.”
ELECTION 2015: Lib Dem president’s bus horror ‘proves need for new law’

The disabled president of the Liberal Democrats has complained of her “outrageous” treatment by a conductor who refused to ask a young dad to move his child’s buggy from the wheelchair space on a near-empty London bus.

Baroness Brinton, a wheelchair-user, was told by the bus conductor on one of mayor Boris Johnson’s new Routemaster buses that she would have to wait for the next bus.

The disabled peer said the female conductor “refused to engage” with the young man in charge of the buggy.

Baroness Brinton said: “The driver was turning round and calling ‘can you make space?’ but the guy just turned his back. It was quite bizarre.”

The incident took place as she tried to travel on bus route 24 from Euston station to an election meeting at the Liberal Democrats’ central London headquarters on Tuesday (28 April).

She was eventually left “very angry” on the pavement, with passengers waiting for other services who had witnessed the incident and were “frothing at the mouth” at the way she had been treated.

She was able to take a later bus, and when a passenger with a buggy boarded during the journey, they were both able to travel comfortably side-by-side in the wheelchair space, with the help of the conductor.

She said: “They were two completely opposite experiences and that is not on. It comes back to training. It’s all about the attitude.”

Baroness Brinton said the incident illustrates why her party has included a pledge in its manifestoto give wheelchair-users priority over children’s buggies on buses.

She said: “It is obvious that it is a major problem [if this happens] on a virtually empty bus. It was just outrageous.

“Just a week before polling day is not the best time to be delayed on the way to work.”

If her party is unable to secure enough influence to force government legislation on the issue, she pledged to try to secure debates in the next parliament, and attempt to bring forward a private member’s bill that would ensure wheelchair-users have priority use of the spaces on buses, and that accessible parking spaces for blue badge-holders can also be enforced.

Baroness Brinton said she had now received a “grovelling apology” from Transport for London, which had told her that both the driver and the conductor would receive fresh training from the bus operator Metroline.

But her experience mirrors that of disabled campaigner Doug Paulley, who is being backed by the Equality and Human Rights Commission in his legal bid against another bus company, First Bus, to ensure that wheelchair-users have priority in the use of dedicated wheelchair spaces over parents with pushchairs.

Paulley told DNS: “This just goes to show that sadly my experience is not uncommon and we very much need to achieve a binding judgment on the issue.”

Chris Fry, managing partner of Paulley’s lawyers, Unity Law, said: “Baroness Brinton’s experience illustrates exactly why we need a definitive legal ruling on this issue.

“It’s not acceptable that disabled people can only reply on the goodwill of non-disabled passengers to vacate wheelchair spaces.

“We need the Supreme Court to hear Doug’s case as soon as possible, so that bus drivers, passengers and wheelchair-users all know exactly who has priority over the space.”

Transport for London (TfL) said Metroline was investigating the incident.

Mike Weston, TfL’s director of buses, said in a statement: “I’m very sorry about Baroness Sal Brinton’s experience.

“Our guidance to bus drivers clearly states that wheelchair-users are to be given priority access to the dedicated space on our buses, even if it is occupied by a buggy or other passengers.

“Drivers are asked to use the on-board automated announcement system to make it clear when the wheelchair space is needed and, if necessary, to ask buggy-owners to share the space, move or fold their buggies.

“In a case where another passenger will not make space, the bus driver should explain the situation to the wheelchair-user.

“If the next bus is not already there, the driver is under instruction to contact his or her garage so that the next bus can be notified to pick up the wheelchair-user.”

A TfL spokesman later confirmed to DNS that if a passenger refused to move, a conductor or driver would not take any further action to clear the space, such as refusing to continue the journey until the buggy was moved.
ELECTION 2015: Greens agree to debate their backing for assisted suicide

The Green party has agreed to take part in a public debate with disabled activists on its pledge to legalise assisted suicide.

The challenge to debate the issue came from a leading member of the anti-assisted suicide campaign group Not Dead Yet UK, Dennis Queen, who said that she and many other members “who might well usually vote Green” would not do so now because of the party’s manifesto support for legalisation.

She also said that disabled people who were long-term members of the party were considering leaving the Greens because of their stance.

One of them, NDY UK member Simone Aspis, said she was “just hanging in there” with her membership, because she was “deeply concerned” with the party’s position on assisted suicide.

She said she was considering not voting for the Greens at Thursday’s general election, but said there was “no alternative” because of other parties’ past support for policies based on eugenics.

She said the Greens’ position on assisted suicide was “pretty outrageous” when it was also saying that it supported the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

Aspis said: “The party is saying it supports disabled people’s rights to independent living and to mainstream education and yet hasn’t cottoned on to the fact that assisted suicide is open to abuse and it actually undermines disabled people’s rights to everything else.

“The UN convention is thinking about disabled people’s right to life, not to be killed.”

The party’s manifesto says a Green government would “provide the right to an assisted death within a rigorous framework of regulation and in the context of the availability of the highest level of palliative care”.

But it also promises that the Greens in government would enforce the UNCRPD, although it does not explain how this would be implemented.

Queen said: “I’m not sure there’s an article in the UN convention which isn’t broken by supporting the further legalisation of assisted suicide, and making it more easily accessible to people who are sick and disabled.

“Try sentence one article one [‘The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’].”

She added: “I challenge the Green party to have a public debate with Not Dead Yet UK on this subject.

“We are not enjoying equal rights and freedoms if some of us are given special consideration leading to dissolved rights under the law.”

A Green party spokeswoman said: “The vast majority of opinion within the Green party’s disability and equalities group seems to be that it is right to support the UN disability convention, as well as the right to assisted dying within a rigorous and agreed framework.

“We do not see these things as incompatible.

“Our disability spokesperson, Mags Lewis, has said she is more than happy to agree to a meeting or public debate about this issue after the election.

“However, the Green party agrees policy at conference, where all members have an equal voice and vote, so that would be where policies are debated and amended.”

The challenge to the Green party stance came as the Scottish parliament’s health and sport committee published its report into proposals to legalise assisted suicide in Scotland.

The assisted suicide (Scotland) bill has been brought forward by the Green MSP Patrick Harvie, following the death last year of Independent MSP Margo MacDonald, who introduced it in November 2013.

But the committee has now concluded that the bill contains “significant flaws” that present “major challenges as to whether the bill can be progressed”.

A majority of the committee do not support the bill’s “general principles”, but have chosen to make no formal recommendations to parliament because the issues are “a matter of conscience”.

The full Scottish parliament will now debate the bill and decide whether to agree to its general principles. The debate will take place by 29 May.

Meanwhile, a disabled woman has secured the right to challenge in the courts a decision by the director of public prosecutions (DPP) for England and Wales that she believes will make it easier for healthcare professionals to assist someone to kill themselves.

Lawyers for Nikki Kenward say that Alison Saunders, the DPP, exceeded her powers last year when she “clarified” the guidelines on when to prosecute a doctor or nurse for assisted suicide.

Saunders said in October 2014 that the section of the Crown Prosecution Service guidelines that explain when prosecution of a healthcare professional would be more likely refers only “to those with a specific and professional duty of care to the person in question”.

The anti-legalisation campaign group Care Not Killing said this would mean that doctors “who have made a name for themselves by assisting suicides in various ways whilst not being the patient’s primary care giver, are less likely to be prosecuted”.

There will now be a full judicial review of Saunders’ decision.
NHS ‘has wasted more than a year’ on latest bid to improve wheelchair services

The NHS has been accused of spending more than a year on its latest bid to improve wheelchair services, while producing nothing but two conferences and a series of working groups.

Critics also fear that NHS England’s wheelchair services improvement programme has paid lip-service to the views of service-users.

They say the process is in danger of becoming the latest in a long line of failed bids to improve a service that struggles with lengthy waiting-lists and leaves many disabled people without the right wheelchairs.

There are also concerns about the influence of the disability charity Whizz-Kidz on the reform process.

NHS England organised a “wheelchair summit” in February 2014 – more than 14 months ago – with a second summit following on 27 November.

In a bid to inject some momentum into the process, NHS England set up the Wheelchair Leadership Alliance, chaired by the disabled crossbench peer Baroness [Tanni] Grey-Thompson.

Its first meeting was in January, with the second taking place this week.

The alliance has been told by NHS England to produce a one-page “wheelchair charter”, but there is concern that it has not pushed for tough new standards for NHS wheelchair services.

Sir Bert Massie, the former chair of the Disability Rights Commission and himself a wheelchair-user, said he was concerned and mystified by the wheelchair improvement programme.

He told Disability News Service (DNS): “I think there is something very distasteful about this.

“I can’t work out what is going wrong. I can’t work out why it takes nearly a year to write a charter.”

He chairs the Community Equipment Code of Practice Scheme (CECOPS) social enterprise, which has already drawn up a code of practice for the community equipment industry across the UK, backed by the Care Quality Commission, the Voluntary Organisations Disability Group, the Health and Safety Executive, the Royal College of Nursing and the Association of Directors of Adult Social Services, among others.

Sir Bert said he was frustrated by NHS England’s refusal to adopt CECOPS, which would provide a set of national standards for wheelchair services.

He said: “We have done the standards for them. They are here. What’s their problem?

“Several of the alliance members personally support our standards and have recommended their adoption, so I don’t understand NHS England’s and NHS Improving Quality’s reluctance.”

Baroness Grey-Thompson, who has only been involved in the improvement programme since November, agreed that “not a lot” had happened in the 14 months since the first summit, while the alliance had only just secured final approval from NHS England for a new website to promote its efforts.

Speaking to DNS at the Naidex 2015 independent living exhibition at Birmingham’s NEC, where she spoke about the alliance, she said: “We probably needed the second summit because of the limited movement since the first.

“Why stuff didn’t happen [before], I don’t know really. It is even difficult to pinpoint how many times people have tried to change this… because it’s ‘lots’. I don’t know if the political will wasn’t there.”

She admitted that a one-page charter was not going to improve wheelchair services on its own, but added: “The charter is a wish-list. We need a really convincing argument behind it about why it needs to change.”

She agreed that there was a need for standards, and said she did not want to “reinvent the wheel”, but insisted that there was a need to go through both an internal and public process before deciding on any standards.

According to NHS Improving Quality, an estimated 15 per cent of wheelchair-users wait more than 12 months for their NHS chair, while up to half of all people who use wheelchairs will develop a pressure sore at some point in their life.

The cost of treating the worst pressure sores can be as much as 16 hip replacements.

For every 182 wheelchair-users not able to work because of incorrect equipment or delays, the social security bill can increase by up to £1 million, compared with an economic contribution of up to £4.7 million if those wheelchair-users are able to work.

Critics of the improvement programme have pointed to a blog written by Liam Dwyer, a former building manager in the construction industry, who has motor neurone disease (MND) and uses an electric wheelchair and communication devices, and was one of the disabled people asked to attend the first wheelchair summit in February 2014.

Subsequently, he was asked to join one of six “work streams” that were set up at the summit.

After an initial meeting, he says in his blog, he did not receive any further information until he received an invitation to the second summit, in November.

He says he and other service-users were treated like “dog muck”, and “as if they don’t have a brain”.

Dwyer says in his blog: “About 30 per cent of my friends and fellow MND sufferers would be dead by now since the time the first summit took place.”

He adds: “I don’t know how long I have left on this planet and I am not prepared to sit back and let this appalling behaviour and great waste take place at the expense of dying and needy patients, especially where it impacts upon the lives of people just like me who rely totally upon equipment, not for social reasons, but just to live.”

Baroness Grey-Thompson said she would be “really upset” if service-users had not been listened to, “because they are the ones we are doing it for”.

She plans to meet with Dwyer to discuss his concerns, and added: “We do need to reinvigorate some of the work streams.”

But there are also concerns about the influence of the disability charity Whizz-Kidz on the process.

The charity, which has close links with the former NHS England chief executive Sir David Nicholson, is believed to have had about 10 representatives and service-users at the first wheelchair summit in February 2014 – an event that was chaired by Sir David – even though it was attended by less than 80 people.

Whizz-Kidz also has representation on both of the new sub-groups set up by the alliance, as well as a seat on the alliance itself, which has 12 members.

Sir Bert said: “Whizz-Kidz are on the alliance and have a very clear vested interest because they want to compete for services. There is a real conflict of interest.

“My fear is that they are leading the agenda and I think there needs to be a different agenda.

“The agenda should not be about who provides the services but which organisation has the competency and how to measure that competency and what is their accountability to disabled people.”

Christine Anderson, from Lancashire, whose son Christopher is a wheelchair-user, said she had noticed an “imbalanced” Whizz-Kidz presence at the first summit.

But she said: “I was filled with hope that something was going to change and people were listening.”

So far, she said, she has seen “no change, no benefit” from the process, with some disabled children still being told they have to wait three years for a powered wheelchair.

Following the first summit, she was placed on the improvement programme’s commissioning and procurement work stream, but was asked to attend just one meeting.

She said it appeared that NHS England was favouring Whizz-Kidz ahead of other organisations, without going through the necessary processes.

Baroness Grey-Thompson said she accepted that Whizz-Kidz potentially had a lot to gain from the reform of wheelchair services, and that she had to be “mindful” that one organisation did not exert too much influence over the process.

Last October, at the Conservative party conference, Ruth Owen, chief executive of Whizz-Kidz, told her charity’s fringe meeting that the NHS “does not procure in an effective and efficient way”.

She spoke of her own struggle to obtain a wheelchair through the NHS, a process she described as “tortuous”, and told DNS after the meeting that the service was “crap”.

Whizz-Kidz is believed to have partnerships with 12 NHS trusts, which aim to improve local wheelchair services – for adults as well as children – and its work was praised by health secretary Jeremy Hunt in his keynote speech to October’s party conference.

Owen told the fringe: “There needs to be more choice because this area of the NHS do not want choice, change or to listen to the customer. They don’t want to believe there is a problem, and there is a problem.”

DNS asked Whizz-Kidz for a response at noon on 29 April, but by the end of today (30 April) a spokesman said he had not had time to answer a series of questions.

Instead, he released a short statement, saying: “Whizz-Kidz is delighted to be part of the Wheelchair Alliance along with a number of other organisations, as we see wheelchair reform as vital for disabled children and young people in this country.

“Whizz-Kidz’s focus is centred on supporting young disabled people to ensure that they receive the right mobility at the right time in their lives and we’re thrilled that NHS England are driving transformation in this area.”

An NHS England spokesman said in a statement: “NHS England is supporting improvements in wheelchair services to ensure wheelchair-users and their families can lead full, independent and active lives.

“Since the first meeting, NHS England has been leading three national pieces of work which will lay the foundations for further improvement, including a new national wheelchair dataset, a new national tariff, and support and resources for commissioners.

“These are not ‘quick fixes’ and each of these pieces of work requires extensive testing and engagement to ensure maximum impact and success.”

As far back as 1986, a report by Professor Ian (later Lord) McColl called for major improvements to wheelchair services.

Five years later, responsibility for wheelchair provision was devolved from national level to local health authorities and trusts.

And in 1994, the former disabled people’s minister Alf (later Lord) Morris told MPs that thousands of disabled people saw themselves as “victims of state-sanctioned discrimination” because of the failure to provide them with powered wheelchairs.
Six years on, Trailblazers go back undercover on buses, trains and taxis

Young disabled campaigners are to go undercover across the UK to find out whether access to public transport has improved since they carried out a “damning” study six years ago.

Members of the Trailblazers network will check out buses, trains and taxis, and will examine access to stations, bus ramps, journey times, staff training and attitudes, and even the behaviour of fellow passengers.

Six years ago, another undercover Trailblazers investigation found that disabled people were struggling to use public transport, because of problems with safety, reliability and cost, as well as a lack of basic facilities at stations and on trains, and inflated prices for accessible taxis.

It concluded that “many young wheelchair-users and people with mobility difficulties face serious challenges when accessing public transport”, and it called on the government, local authorities, and transport providers, to review their accessibility policies.

The 2009 report was the first of Trailblazers’ Inclusion Now series of three investigations into public transport, education and leisure.

Now, six years on, Trailblazers will be asking whether transport providers kept their subsequent promises to improve services, particularly in the wake of the London 2012 Paralympics.

Sulaiman Khan, a member of Trailblazers who lives in London and uses a wheelchair, said: “I experience problems on a regular basis, just trying to get from A to B on public transport.

“A lot of train stations just don’t have the facilities for disabled people and I often find myself having to make my way to another station in the opposite direction of my destination, just so I can physically board the train.

“This not only adds to journey time, it also increases the cost of my ticket.

“Accessibility isn’t the only issue – poor staff knowledge and public attitudes towards disabled people are still commonplace.”

He pointed to the high-profile legal case taken by wheelchair-user Doug Paulley, who was refused access to the accessible space on a First Group bus, after a mother refused to move her pushchair.

In February, the Equality and Human Rights Commission decided to support Paulley in his bid to appeal to the Supreme Court, after he lost his case against First Bus in the court of appeal.

A spokesman for Muscular Dystrophy UK, which runs Trailblazers, said: “We want to hear from young people across the UK on their experiences using public transport.

“We want to find out whether promises from transport providers and local authorities are truly making a difference on the ground.”

To take part in the investigation, which will take place over the next three months, visit theTrailblazers website.

News provided by John Pring at www.disabilitynewsservice.com

DWP Secret reviews, Disabled students to sue government, Disabled people designed out, Mayor defends Liberty date switch, Mobile revolution makes disabled people more appealing

The start of another week and maybe, just maybe spring has finally sprung! To celebrate we’ve decided to have two of our upstairs bedrooms redecorated.

All of our children have flown the nest and we have an opportunity to decorate using colours schemes we actually like. This has required some delicate negotiations with the grown up offspring but these have now been successfully completed.

Given that I have never actually been upstairs, conversations with my wife about colour schemes and wall coverings have been an interesting experience. It is very difficult to appreciate the subtleties of space and light without the actual experience of being in the room. Here’s where modern technology and, in particular the ubiquitous IPhone comes to the rescue.

Using the Face Time app to link our phones, Sue became a TV Make Over presenter and gave me a real time tour of the bedrooms and I was able to see first hand what needed doing. I was able to direct her to show me particular features or views and although not perfect, it worked really well.

The colours are chosen and the painters are in and Sue goes upstairs each evening clutching her IPhone and shows me the progress the guys are making. I can also check on the quality of their workmanship! Hoorah for technology I say.

Have a great week and here’s the latest news.

News Roundup

Secret DWP reviews called for improvements after benefit deaths

The government has admitted that more than 30 secret reviews carried out following the deaths of benefit claimants called for improvements in how the Department for Work and Pensions (DWP) operates locally and nationally.

The “appalling” statistic has added to pressure on DWP to publish the reviews, and is the latest in a series of revelations to emerge through Freedom of Information Act (FoIA) requests, which disabled activists say “should be setting alarm bells ringing at Westminster”.

Last night (5 March), a member of the Commons work and pensions select committee demanded that DWP finally confirms what changes it has introduced as a result of the reviews, and reveals how many of those who died had had their benefits sanctioned.

Labour MP Debbie Abrahams said: “I have repeatedly asked for information from ministers and been met with a wall of silence.

“And that’s because, frankly, certain ministers have too much to hide and too much to lose.”

The latest FoIA figures featured in a Dispatches documentary on the government’s benefit sanctions regime, which was broadcast on 2 March on Channel 4.

Dispatches revealed that, of 49 secret “peer reviews” carried out since February 2012, 33 contained recommendations for improvements in procedures at either national or local level within DWP.

Dispatches also revealed that 40 of the 49 internal reviews had been carried out following the suicide or apparent suicide of a benefit claimant, information that came from a response to an FoIA request from Disability News Service (DNS).

Despite a series of FoIA requests from DNS to DWP, the department has refused to publish the reviews, or their summaries, recommendations or conclusions, even with personal details removed.

DNS has now appealed to the Information Commissioner’s Office over DWP’s refusal to release this information.

The FoIA response said that any national recommendations were “referred to the Customer Journey team for inclusion in their regular reviews”, while local recommendations were “referred to the appropriate office to be taken forward”.

DWP ministers and officials have been repeatedly criticised for their attempts to avoid releasing key information about the peer reviews.

John McArdle, co-founder of Black Triangle, said: “In an open and democratic society, the public must be able to scrutinise the actions of public authorities in order to hold them to account and if the DWP are refusing to reveal the recommendations from these 33 cases, it will make that an impossibility.

“We call on everyone now to demand that the DWP releases the summaries of the reviews. We really need to know what these recommendations were.”

He said there was “no reason” why DWP could not anonymise the details of the deceased claimants, as theMental Welfare Commission for Scotland had done in the case of Ms DE, when it concluded that the assessment of her “fitness for work” and the subsequent denial of the out-of-work disability benefit employment and support allowance (ESA) was at least a “major factor in her decision to take her own life”.

Bob Ellard, from Disabled People Against Cuts, said: “The FOI response that ‘recommendations have been referred to the Customer Journey team for inclusion in their regular reviews’ might be appropriate for missing copier paper, but is not acceptable for reviews into avoidable deaths of human beings.

“Did anyone at DWP ensure that recommendations got turned into action to prevent more claimant deaths? Were ministers informed? Did ministers take responsibility for the prevention of further claimant deaths?

“These continuing revelations should be setting alarm bells ringing at Westminster.”

Ellard said there was a need for “full transparency” and yet the DWP was “stalling”, while Labour’s frontbench had been “silent” on the issue.

Despite the silence from Labour’s frontbench, Abrahams is pushing ministers to release evidence that the government has been to blame for any of the deaths, or that DWP’s actions had been “inappropriate or incorrect”.

She told DNS: “It’s taken an FoI, but it’s good that the government have had to acknowledge publicly that at least 33 people who have died whilst in receipt of social security support have done so in circumstances that merited a change in the way the DWP operates at both local and national levels.

“What we need to know now is how they are changing the system to ensure that these appalling statistics don’t rise. We also need to know how many of these people were, or had been, sanctioned.

“The fact that the DWP is making it so difficult to get straight answers to questions about what they’re doing to ensure vulnerable people are treated appropriately whilst on social security is appalling.”

The latest FoIA responses came as a coroner found that a disabled woman killed herself after receiving a letter warning that she could lose her disability benefits.

Julia Kelly, from Kingsthorpe, Northampton, who had chronic back pain after two serious car accidents, died in November after previously having to attend three tribunals to overturn decisions to remove her ESA.

She had reportedly received a letter from DWP asking her to pay back £4,000 in benefits because she had failed to declare some savings.

The coroner, Anne Pember, recording a verdict of suicide, said she believed that the “upset caused by the potential withdrawal of her benefits had been the trigger for her to end her life”.

A DWP spokeswoman said: “Our thoughts are with the family of Julia Kelly.

“ESA is a means-tested benefit and entitlement depends on the amount an individual has in savings or capital.

“If a claimant exceeds the threshold, with thousands of pounds in savings, they may no longer be entitled to the benefit.”

But she refused to say whether the case would be the subject of a peer review.

She said: “Peer reviews are private documents containing extremely personal information. It would be inappropriate for us to make these public and we do not intend to provide a running commentary on their existence or progress in specific cases.”

Rick Burgess, co-founder of New Approach, which is dedicated to scrapping the work capability assessment – which tests eligibility for ESA – said the coroner’s verdict showed that Julia Kelly had killed herself “because of the threats made to her by the DWP”, and that it was “no wonder” the department “uses every means to cover up evidence of its crimes”.

He added: “As with child sex abuse and murder, we have an entire establishment that will not police itself when it commits grievous crimes.”
Disabled students win permission to take government to court

Two disabled students have won permission to launch a legal case against the government, over plans to restrict funding for the support and equipment that helps them attend university.

They say they have been “ignored” by the government in a consultation on its plans to reform the disabled students’ allowance (DSA) system.

The Department for Business, Innovation and Skills (BIS) admitted last October that its planned cuts and reforms to disability-related higher education support would have a “negative impact” on disabled students, and increase the chance of them facing discrimination at university.

Now law firm Irwin Mitchell has secured permission for a judicial review of the proposals, to challenge whether it was unlawful for BIS to consult only with a “select group” of stakeholders.

DSA is a non-means-tested grant that assists with the extra costs a disabled student faces during higher education study, but the BIS proposals only apply to students from England.

It is currently awarded to more than 60,000 disabled students, with spending of nearly £150 million on undergraduates in 2012-13.

The government wants to force individual universities to step in and fill the gaps in support that will be left by the DSA cuts, through their duties to provide reasonable adjustments under the Equality Act.

The legal action is supported by the National Deaf Children’s Society and Ambitious about Autism, while The Alliance for Inclusive Education (ALLFIE) has been coordinating the gathering of witness statements from disabled students.

ALLFIE, which has supported the two students taking the case, welcomed the decision to allow it to proceed to judicial review.

Simone Aspis, ALLFIE’s policy and campaigns coordinator, said: “We are pleased that Zanna’s and Joseph’s judicial review case will be heard in the courts.

“From our view it is not only the lack of consultation that is at issue, but also that the DSA reforms will have a significant impact upon disabled students.”

She said that universities had told the government that they do not have the resources to provide the support disabled students need “in order to flourish in higher education”.

Aspis said: “As far as we concerned, the DSA reforms are just another attack on disabled students’ support to enable them to access higher education.

“We already know that disabled people are less likely to be thinking about university and that admissions tutors will be asking how much it will cost them to provide support.”

Although BIS has postponed some of the DSA changes until 2016-17, many will still be introduced from the start of the academic year in September. The consultation on the government’s plans ended last month.

Both the disabled students taking the case say they have “major concerns” about the consultation process, and believe the proposals could prevent many other disabled young people from starting or completing a university education.

Zanna Messenger-Jones, 17, from Cumbria, who is deaf, is applying to study art and design or fashion design at several universities.

But without DSA she is not sure that she will receive the support she needs to follow group discussions and conversations between teachers and other students.

Her college and audiology centre currently provide her with specialist equipment and software, but she cannot take it with her to university, and she will also need adaptations to her university student accommodation, such as a flashing fire alarm, which would currently be paid for through DSA.

She said: “I’m really worried that if I don’t receive the appropriate support in terms of DSA at the beginning of the academic year it could seriously impact my studies.

“To not have been asked about the changes is not right and I want to be informed about what is proposed and have my views heard.”

The second student is 19-year-old Joseph Bell, who has autism, and began studying physics, astrophysics and cosmology at Lancaster University last October.

DSA funded an assistant to support him with adjusting to university life when he started his course, and continues to provide him with vital assistance.

He said: “Just because I made it to university, does not mean I’ll cope without support.

“Without DSA, the trivial things would become impossible for me. This also applies to many future disabled students, who are being ignored by the government.”

Alex Rook, from lawyers Irwin Mitchell, who is representing the two students, said: “Thousands of students are reliant on this support to enjoy a fulfilling and rewarding higher education, but the proposals mean there is a real concern many could be left without the help they need.

“We believe the student community should have been given the chance to have their voices heard on this matter, prior to any decision being made, and we are delighted to have been given permission to proceed with a judicial review.”

A BIS spokesman said he could not comment on ongoing legal proceedings, but confirmed that permission for the judicial review had been granted.

On Monday, Greg Clark, the Conservative minister for universities, science and cities, told a hustings event in Westminster*: “I don’t want to do anything that would put off a single disabled student from going to university, quite the reverse.”

But he said – in response to a question on DSA from Aspis – that there was “a challenge for universities” to meet their duties to make reasonable adjustments for disabled students under the Equality Act, “just as any other employer [sic] has to” to make sure their premises are accessible.

He said he could not comment on what his party would do if it won the next election, because BIS was still consulting on its plans, but he said: “I want to work consensually with disabled students and their representative groups to get it right.”

*Watch from one hour, 12 minutes
Two city buildings ‘design out disabled visitors’ by scrapping blue badge spaces

Two major cultural institutions in Manchester have been criticised for “designing out disabled people” by removing all of their on-site blue badge parking spaces during multi-million pound renovation programmes.

Manchester Central Library and the Whitworth art gallery, part of the University of Manchester, both offered several off-road blue badge spaces outside their buildings before huge new redevelopment projects.

But the library has now paved over spaces both in front of and behind the building, while the gallery has removed four accessible spaces that were previously within its grounds.

Both projects received millions of pounds of public funding, with the £15 million extension to the Whitworth – funded through the Heritage Lottery Fund and Arts Council England – opening earlier this month, and the£50 million library redevelopment reopening nearly a year ago.

But both institutions are now less accessible to disabled people who need to arrive in their own cars.

The Whitworth expected the city council to place three new blue badge spaces – with drop kerbs – in a street beside the gallery, Denmark Road, but they have been delayed by pedestrianisation works to nearby Oxford Road.

One wheelchair-user, Guy, is now unable to visit either building without a carer or personal assistant, and said that both redevelopments had “designed out disabled people”.

He was previously a frequent visitor to the central library and the gallery because of his work as an artist, and even had his first date with his partner at the library.

He said: “They have designed out disability access. It’s all very well putting a ramp in, but if you can’t get to the building you can’t get to the ramp.”

He added: “I have visited the library a few times since the opening, but I have had to have someone with me to help me get into my chair on the busy streets, and to just stop me getting mowed down.

“As an independent wheelchair-user, I can never go in there alone again.”

A council spokesman said it planned to provide 16 new disabled parking bays on Peter Street and Mount Street, which both run past the library, but this had been delayed due to ongoing improvement work around the area.

He said: “Disabled badge-holders are also able to park for free and with no time limit in any pay and display bay, such as those which can be found on a number of streets very close to the library.”

But Guy said: “The original disabled spaces were off-road, giving safe, secure space to unload a wheelchair and manoeuvre without the risk of being hit by a car.

“That’s precisely why they were put there in the first place. Disabled people have now been placed in significant danger due to their removal.

“It appears that the very last thing to be built in the entire project is the disabled access parking.”

He said he feared the provision of the 16 new bays “may still be years away”, while parking for free in regular pay-and-display bays was often suggested as a sub-standard alternative to dedicated disabled bays.

He said: “As an independent wheelchair-user, to use a regular parking space I have to wheel myself along the middle of the road until I find a drop kerb, usually at a junction. That is, if I have a death wish.

“Disabled people come last, are placed in danger, and are asked to lose good access for the sake of design. They should have designed it better. It’s a public building and I paid for it as well.”

Guy said that he cried in his car when he realised what had happened with the Whitworth spaces.

He said: “I told the Whitworth that I go in there at least once a week. I know the people in there, it’s an important part of my life.”

When he arrived outside for a recent visit, he called the gallery to tell them where he was and they had to send staff out to carry him onto the pavement and then help him across the road.

He said: “If you can’t get your car there, you can’t get in, but 99 per cent of disabled people with wheelchairs use the car.”

He said the three accessible bays that would eventually be installed in Denmark Road beside the gallery would not be available exclusively to gallery visitors, while the road itself was “probably not wide enough to accommodate extra wide parking to get a wheelchair out of a car”, and the pavement was “uneven and is not wide enough”.

A spokesman for the Whitworth said the council’s highways department would be painting double yellow lines on Denmark Road as a temporary solution. This would allow three hours free parking for blue badge-holders.

But he admitted that there were currently no dropped kerbs, and said: “I think the initial temporary solution is to get the double yellow lines in and then continue the pressure for the bays and changes to the kerb.”

He added: “At the moment we will have staff on hand each week to assist disabled visitors who need a drop-off point.

“We have posted a contact number on our website so that any disabled visitor requiring assistance can contact us in advance of our visit.

“We sincerely apologise to any visitors who have been inconvenienced by the current situation.”

But Guy said that offering a drop-off point would mean he would not be able to visit as an independent disabled person.

He said: “Once again, good, off-road disabled access has been removed without any thought to the replacement.

“I am told by the gallery that I must park on double yellows, am only allowed to stay for three hours and must place myself at greater risk.

“As an independent wheelchair-user, I have tried now on two occasions and cannot gain access to the gallery.

“The options that are supposed to be in the pipeline are years away, won’t be sufficient and so I will be excluded again forever.”

Meanwhile, two government ministers – the Liberal Democrat communities minister Stephen Williams and the Conservative minister for disabled people, Mark Harper – have backed a new industry action plan, which aims to make buildings and public spaces more inclusive.

The two ministers chaired a meeting of representatives from the construction and design industries to review the plan, which includes measures on vocational and professional training, promoting industry awareness, and supporting cross-industry collaboration on research and innovation.

John Mathers, chief executive of the Design Council, which hosted the round-table meeting, said: “Our goal is to ensure that creating inclusive environments for everyone becomes the standard approach to planning, design, construction and management practice.”

Organisations including the Construction Industry Council, English Heritage, the National Register of Access Consultants, the Royal Institute of British Architects and the Access Association have signed up to the action plan.

Williams said: “In October last year we issued a challenge to key players in the construction industry to create buildings, places and spaces that work better for everyone by making inclusion a key part of their work.

“The action plan we have seen today is a great start in making a more inclusive built environment a reality.”
Mayor defends Liberty date switch

London’s mayor has been forced to defend the decision to change the date of the capital’s annual disability arts festival, and to move it from a Saturday to a Sunday.

Some disabled artists fear that the move could damage visitor numbers, particularly as this year’s event – on 26 July, rather than its traditional date in early September – will coincide with the International Paralympic Committee’s Athletics Grand Prix Final.

When Liberty was held for the first time in 2003, it was held in Trafalgar Square, before being moved eight years later to London’s South Bank.

It established itself as a vital date on the capital’s disability arts calendar, and became a tourist attraction in its own right, playing a major part in raising awareness of disability rights and boosting the profile of some of the country’s most talented disabled artists.

But for the last two years, it has merged with National Paralympic Day (NPD), and is hosted by the Queen Elizabeth Olympic Park in Stratford, east London.

This year, as well as the athletics, Liberty will be competing for visitors’ attention with Paralympic medal-winning swimmers competing in the London Aquatics Centre, also part of NPD.

The swimmers will be competing just days after their IPC World Championships take place in Glasgow.

The athletics and swimming will be ticketed, but the other events will be free, including Liberty, and the chance to try out disability sports.

The British Paralympic Association is also planning events in at least two other cities to mark NPD.

Last year, Liberty struggled to compete with the attractions of NPD. A low-key line-up on the main stage, combined with the public interest in Britain’s Paralympians, put the arts festival even further into the shadows than in 2013, when it merged with NPD for the first time.

Lengthy queues for autographs from London 2012 stars and medal-winning Sochi 2014 Paralympic skiers Kelly Gallagher and Jade Etherington contrasted for most of the afternoon with rows of empty seats in front of the main Liberty stage.

Dr Ju Gosling, artistic director of the disability arts, culture and human rights organisation Together! 2012, which is based in east London, said she had been frustrated by the decision to schedule Liberty on the first weekend of the school holidays, when more people – including personal assistants (PAs) and carers – leave town “than any other weekend of the year”, while PAs were always much harder to book on a Sunday.

She said Liberty had been “dumped” on “the worst day of the summer for events organisers”.

But following a meeting with the organisers of Liberty and NPD to discuss the concerns, she said they were able to “have a full and frank exchange of views”.

She said: “As a result, we hope to be able to work together to maximise local engagement, as well as to research barriers to participation that will assist with the continuing growth of the festival in future years.

“Together! 2012 remains committed to supporting the Liberty festival in east London.”

Tracey Jannaway, director of Independent Living Alternatives, the company set up by Liberty’s late founder, David Morris, was critical last year of the decision to merge Liberty with NPD, and the lack of promotion for the arts festival.

She said: “So Liberty will be shifted to July. If this is with the usual lack of publicity I’ll be surprised if anyone turns up for the arts side of the event.”

A spokesman for the mayor, Boris Johnson, said: “We are currently finalising plans for the Liberty festival, which is one of the most important showcases of disabled artists in the country and a key cultural event for the capital.

“Last year’s event in Queen Elizabeth Olympic Park attracted bigger crowds than previous events in Trafalgar Square and with the improved access it offers we hope even more people, whether disabled or otherwise, will attend this year.”

He said the park was “one of the most accessible public spaces in London, with good transport links and parking available for disabled people”.

And he said that bringing together “leading artists and top sports stars is a great opportunity to celebrate and showcase talented people in two important fields”.

The spokesman said that Liberty was “a family-friendly event that offers a great free day out at the start of the holidays”, and organisers hoped there would be “sufficient notice for anyone who has personal assistance requirements to plan ahead”.
Mobile revolution ‘is making disabled people more appealing as employees’

The mobile computing revolution is heling to make disabled people more “appealing” to potential employers, as well as to providers of goods and services, according to a leading disabled telecommunications analyst.

In a new report, Digitising the Disabled Billion: Accessibility gets Personal, Chris Lewis says the technology is “increasingly available” to draw a “significant proportion” of the world’s estimated population of one billion disabled people into the “digital age”.

He says that the “explosion” of mobile and laptop-based applications, combined with some specialist equipment, has made accessing business systems easier.

His report says: “As the sophistication of accessible design permeates through the majority of personal and business applications, the value of that disabled person in the company increases.

“Consequently, barriers to using all of the facilities and systems, and communicating and interacting with fellow colleagues, suppliers and customers, decrease dramatically.”

Lewis says in the report that disabled people will increasingly use their mobile devices and apps to “help live their daily lives”, just as other people do, with apps becoming accessible as companies “build accessibility” into their mobile devices.

He adds: “Mainstream apps will become accessible, and specialist apps focused on specialist needs of disabilities will be developed to top up the existing digital life styles.”

Lewis says in his report that the “age of assistive equipment costing tens of thousands of dollars” has mostly been replaced by “algorithms designed to interpret images, sounds and gestures (but perhaps not yet brainwaves)… as academia gets closer to mimicking the human”.

And he says: “If a car can have hundreds of sensors helping it drive around successfully, why can’t I, as a visually-disabled person, have a similar level of sensor-based help to help me navigate my way through life?”

The market in equipment and apps has “accelerated” in the last few years, according to his report, pointing to how someone who is paraplegic can now fly a drone around their garden “through the eye movement captured by a set of goggles”, while virtual reality headsets allow someone to “virtually feel a product created in front of them”.

“Fundamentally,” the report says, “technology in many forms is allowing sensory replacement for both input and output from a disabled person.”

Lewis, who is blind, says the development of the smartphone has changed his life, giving him access to “a wealth of services”.

His report says innovation is now coming from “a much wider range of sources”, with companies often developing “disability oriented solutions alongside mainstream ones” without the need for any “special encouragement”, while it adds: “We are also beginning to see the disabled community itself producing apps appropriate for their peers.”

Mainstream apps are becoming increasingly accessible, says the report, and are “literally life changing, as people get access to services hitherto completely out of reach to different disability groups”.

Lewis adds: “A simple but powerful example would be the ability for me, as a blind person, to hail a cab from my smartphone where I was previously unable to do so from the pavement.”

Discussions with technology companies and disability organisations, as well as polling of disabled people for the report had shown that “momentum is building within different disabled communities to seek to learn the benefits and ways of joining in the digital economy”.

Lewis, the founder and chief executive of Lewis Insight, warns that – although the technology is increasingly available at an affordable price – it will be vital to provide the right training and education.

His report is the second in a series sponsored by the Spanish telecommunications giant Telefonica on how disabled people can use accessible technology to improve their lives.

Lewis concludes: “The technology is increasingly available to deliver this future. The need to educate both the disabled and the people helping them identify the solutions available is the biggest challenge we face.”

News provided by John Pring at www.disabilitynewsservice.com

Life in the PIP queue, Cornwall under the spotlight again. Lottery awards £5 million, NHS Long Stay closures, Brothers Cambridge Union Speech , A Boards a problem

Hello once again! Well I survived! The washing, hoovering and ironing were all done and the house shone like a new pin when Sue returned from India. I became very fond of big bowls of Alpen while she was away, no preparation and very little washing up. My two brilliant daughters cooked for me on a couple of occasions so starvation was narrowly avoided.

Our house is very wheelchair accessible but the kitchen has not been adapted so it does present some interesting challenges. Sue had left a variety of things out for me, a dinner plate, a pudding bowl and a Chelsea mug plus other bits and pieces. I got thoroughly sick and tired of using the Chelsea mug everyday, strange but true!

The fortnight didn’t pass off without a couple of noteworthy moments. The day I took Sue to Heathrow the gas central heating packed up. A call to the installer and a bit of jiggery pokery got it working again. A few days after that I returned home to find I had no electricity. I tracked down the fault to the office plugs but no amount of fiddling around resolved the issue. No power meant no landline or Wi-Fi, and therefore, no Google to look up emergency electricians. Where would we be without a smart phone? Eventually a call to London Electricians produced two very skilled, and friendly Polish men who sorted things out inside an hour. I will definitely vote to stay in Europe.

As long as I’ve lived on the planet I’ve been with other people, hospitals, special schools, home and family. I’ve learned that I don’t like being on my own, in my own home. How do people cope with living alone? If it is by choice well fair enough, but if it’s forced on you, that’s a very different matter. At least I can go out and my family are close by, but for many people, particularly older people, this is not generally the case. I suppose the fact is that we will all end up on our own at some point. I’ve decided to put my name down for a place in a local collective just in case!

Enjoy the news.

News Roundup

Life in the PIP queue: Woman’s ‘wicked’ 14-month wait… just to be assessed

A disabled woman has told how she has been forced to wait more than 14 months to be assessed for the government’s new disability benefit, just days after a Tory minister praised his own performance in cutting waiting-times.

Hannah Wells, from Ascot, Berkshire, told Disability News Service (DNS) that she put in her application for personal independence payment (PIP) in November 2013, with her claim logged by Atos Healthcare early the following month.

It is the longest wait yet by a PIP claimant to be reported by DNS.

She has already had two assessments at the Atos centre in Reading cancelled this year – the first one in January 2015, and the second one this week – because of staff sickness.

And she has been told by Atos that she is “not the only one waiting for an assessment from 2013”.

Debt-collectors are now “knocking on the door”, she is unable to afford the healthy diet she needs (she has type one diabetes, among a number of health conditions), and she cannot afford to run her car or to move to more appropriate housing.

She is also unable to apply for other linked support from her local authority because she is not yet receiving PIP, and is surviving on out-of-work disability benefits, having been placed last November in the employment and support allowance support group, for those with the highest barriers to work.

Wells said: “The system is torturing disabled people who are severely dependant on what they are legally entitled to.

“I worked for more than 20 years and paid into the system. It is torture, making you jump through hoops to get what you are entitled to. It is absolutely wicked.

“It has left me financially crippled. My car is left rotting outside and there is nothing I can do.

“If I get my backdated PIP, I can pay off all the bills and get back to having a real life.”

She tried complaining to DWP, but was told there was nothing they could do to pressure Atos.

And now she fears that she will have to wait even longer, as a disabled friend who himself has been waiting more than six months for an assessment in Reading has been handed a date in April.

An Atos spokeswoman apologised for the latest cancellation but refused to comment on the wait of 14 months.

She said in a statement: “We are now conducting over 2,000 PIP assessments every day and people are being seen as swiftly as possible.”

A DWP spokesman said: “We apologise for the length of time Ms Wells has had to wait. Any PIP award agreed for Ms Wells following her assessment will be backdated.

“We have made significant progress in reducing waiting times.”

Mark Harper, the Conservative minister for disabled people, defended the PIP reforms when he gave evidence to the work and pensions select committee on 28 January.

He said the government had “made a lot of progress compared with where we were in the unacceptable period last summer”, although he said he was “not satisfied with where we are”.

He added: “When the prime minister asked me to do this job, he said this was the top priority for me to sort out, and I have said that consistently since, and it has been and I think we have made considerable process.

“We have hit the secretary of state’s ambition to get the process functioning now in the shape that is acceptable, but we still have more work to do.”

New DWP figures released just before the hearing showed that although the average waiting-time for a PIP assessment had fallen from 30 weeks to 14 weeks, one in 11 of those who had lodged a new PIP claim since the benefit’s launch in April 2013 was still waiting to be assessed, and had been waiting longer than 16 weeks.

Those figures suggested that just under 50,000 claimants had – like Hannah Wells – been waiting longer than 16 weeks for an assessment.

Harper declined to tell MPs on the committee the length of the current longest wait for an assessment.
Cornwall under spotlight again after latest abuse scandal

An “incompetent” council apparently failed to take disciplinary action against any members of staff following allegations of serious ill-treatment and neglect of disabled people at a day centre.

A serious case review, published last week, described incidents of alleged “humiliation, ostracising, favouritism, inappropriate communication, rough handling” and the “deliberate exposure” of a service-user to “an item of which he was known to be phobic”.

It also found that windows had been boarded up so no one could see into the office, while the building was “in a state of disrepair, toilets were broken, there was dried faeces on one of the toilet walls, and old, used incontinence pads piled in a corner in one toilet area”.

But Cornwall Council seems to have failed to take any disciplinary action against any of the staff at the John Daniel Centre in Penzance, following allegations made by a whistleblower in 2011.

The serious case review also suggests that the contents of an internal council report into the alleged abuse led in March 2014 to the collapse of a court case, in which three members of staff had been accused of ill-treatment and neglect under the Mental Capacity Act.

But it was not the first time there had been allegations made about the council-run day centre, which at times was catering for up to 80 adults with learning difficulties at a time. Similar concerns had been raised in 2006.

And concerns were also raised about another of Cornwall’s day centres, Morley Tamblyn Lodge, in Liskeard, in 2007, and again in 2013, with the cause of the problems considered to be “cultural and systemic”.

The council does not appear to have taken disciplinary action against a single member of staff over any of these four series of allegations.

The council’s safeguarding lead, Jack Cordery, declined to say whether any member of staff had faced disciplinary action, but said: “Appropriate management action was taken to investigate the allegations, to learn lessons and put in place measures to prevent the same things happening.”

Reg Broad, former chair of East Cornwall Mencap, who visited the John Daniel Centre after the concerns were raised in 2011, said: “The whole culture in the place must have been absolutely appalling.

“They were being allowed to get away with anything and it was just being covered up.

“It was the denial of any sort of rights. You couldn’t complain – if you did, it was covered up. Nobody from outside was going in regularly.”

The John Daniel Centre is just the latest in a series of high-profile scandals in which Cornish institutions have been criticised for their failure to uphold the rights of disabled people, including the notorious disability hate crime murder of Steven Hoskin in 2006.

A serious case review into his death later found that every part of the adult protection system in Cornwall had been guilty of “significant failures” in dealing with the torture Hoskin – who had learning difficulties – had been experiencing at the hands of a group of young people who had targeted him.

In the same year that Hoskin died, a report by the Healthcare Commission and the Commission for Social Care Inspection into “years of abusive practices” at homes and hospitals run by Cornwall Partnership NHS Trust detailed allegations including “staff hitting, pushing, shoving, dragging, kicking, secluding, belittling, mocking and goading people who used the trust’s services, withholding food, giving cold showers, over-zealous or premature use of restraint”, as well as a lack of care, dignity, respect and privacy.

No member of staff was ever prosecuted over the Cornwall Partnership abuse.

And in 2013, a Cornwall councillor shocked and outraged disabled campaigners across the world after suggesting – in an interview with Disability News Service – that there was a good argument for killing some disabled babies with high support needs, because of the cost of providing them with services.

The disabled people’s organisation Disability Cornwall said this week that it was “very concerned that our county has had to bear yet another situation involving the potential abuse of people with learning difficulties, which has required subsequent investigation”.

A spokesman for Disability Cornwall said: “In light of previous scandals in Cornwall, it appears there have been missed opportunities to learn, or to improve upon, essential services which can have enormous impacts on the quality of a person’s life.

“At the centre of this unacceptable situation appears to be a lack of competency by the commissioning and provider functions of our council, which seems to have led to an appalling deterioration in standards at a centre previously held in high regard by the people who used it, their families and carers, its staff and the wider community at large.”

Broad, who was closely involved in exposing the Cornwall Partnership abuse, said: “The biggest problem is the attitude of the authorities. The attitude is always that people with learning disabilities do not count.

“I almost go so far as to say that they believe they are subhuman. They don’t have any rights.”

Broad said that the “Collin Brewer attitude” was “in the council, both in the officers and the members”, and he added: “To me, that attitude is why we have got this report.”

Cornwall Council says there have been “significant improvements and changes in the services delivered through the John Daniel Centre” since 2011.

And Cordery denied there was a lack of respect for disabled people’s human rights across Cornwall’s institutions.

He said: “Whilst the council accepts that standards of care were not at an acceptable level and there were individual instances of unacceptable behaviour, it does not accept that there is a culture of disrespect for the rights of disabled people.

“When these matters have come to light the council has been open about them and taken appropriate action to address them.”

He also denied that the council, and other institutions, had failed to learn lessons from the Cornwall Partnership NHS Trust scandal.

And although the council admitted that “some aspects of local practice were allowed to develop that fell short of standards, and some unacceptable staff behaviours were not challenged effectively” at the John Daniel Centre, it claimed that independent regulation of council-run day centres – which currently lie outside the remit of the Care Quality Commission – was not the answer.

It insisted that it was “sound management accountability and systems that safeguard adults, not national regulation”.
Lottery awards £5 million for user-led independent living research

Four of the UK’s leading pan-disability organisations have secured £5 million in lottery funding for a major series of research projects on independent living.

The Big Lottery Fund has given the money to Disability Action Northern Ireland, and its research partnersDisability Rights UK, Disability Wales and Inclusion Scotland, for the Disability Research on Independent Living and Learning (DRILL) project.

The four partners said the project would “significantly strengthen our future capacity to influence decision making about independent living” and would “inform the policies, manifestos and campaigns of the disability sector for many years to come”.

The project will be spread over the next five years, with research carried out both across the UK and in each of the four countries.

The first task will be to work with disabled people and their organisations to decide on research priorities.

Rhian Davies, chief executive of Disability Wales, said she was “really thrilled” with the funding, and said: “This is a real opportunity in Wales to drive forward the disability research agenda.”

She said she hoped the project might even lead to a university setting up the first disability studies department in Wales.

Liz Sayce, chief executive of Disability Rights UK (DR UK), said: “We are thrilled to be working with our sister organisations across the UK to push the boundaries of research based on what matters to disabled people’s lives.”

She said the research would be “unique in starting from the priorities that come from disabled people, and will be designed to impact on policies and practices that make a difference in people’s lives”.

Sue Bott, DR UK’s director of policy and development, said: “It is very exciting because we are going to be able to get some really robust research to back up our campaigning on the issues we are really concerned about.

“Otherwise you have to just wait and persuade some academics to be interested. This way, disabled people are really in the driving seat.”

Disabled people will co-produce the research, she said, which should provide an example to other research organisations, develop the careers of existing disabled researchers, and “upskill disabled people interested in acquiring research skills”.

The results of the research will be shared widely with disabled people and those responsible for policy and practice.

Sayce said: “We hope the research will underpin new work to foster the full participation of disabled people in a rapidly changing world – including people from different communities and backgrounds, living with a wide range of mental and physical health conditions and impairments.”

Bill Scott, director of policy for Inclusion Scotland, added: “The solution-focused research will also provide the evidence that we (disabled people’s organisations) need to influence the shape of future Scottish government policy and public service provision so that they support disabled people to reach their full potential and be involved in all aspects of Scottish economic and community life.”
NHS long-stay closures ‘are too little and too late’

A leading self-advocate has described the announcement that NHS England is to close some of the remaining hospitals that provide in-patient mental health beds for people with learning difficulties as “long overdue” and still not good enough.

The surprise announcement by Simon Stevens, chief executive of NHS England, came as he and three other Department of Health civil servants gave evidence this week to the Commons public accounts committee.

Members of the committee had been expressing concern at the lack of progress in moving people with learning difficulties out of so-called assessment and treatment centres and into community settings.

They were examining the progress made since a BBC Panorama programme in May 2011 exposed abuse of people with learning difficulties at Winterbourne View, a private unit on the edge of Bristol.

The government subsequently promised that – by 1 June 2014 – anyone with a learning difficulty and challenging behaviour who would be better off supported in the community, should be moved out of hospital.

But a National Audit Office (NAO) report published last week found that, in the nine months to June 2014, there were 300 more admissions to hospital than there were discharges.

NAO said there were 2,615 people with learning difficulties and challenging behaviour in hospital in England in March, 2,601 in June 2014, and 2,600 in September 2014.

The latest figures show that for every seven patients being discharged, six more are being admitted.

And they also show that the average length of stay, including admissions and readmissions, in four hospitals visited by NAO was 17 years and four months.

Anne McGuire, the Labour MP and former minister for disabled people, asked whether the four civil servants understood the “cynicism” of families of people still in the units, because the targets had been “pretty badly missed”.

Stevens told the MPs: “None of us should be sitting here defending the indefensible. I think people have been badly let down.”

He said there needed to be a “permanent shift away from the residue of institutional care models,” although he pointed out that the 12,600 in-patient NHS beds for people with learning difficulties in the mid-1990s had fallen now to about 1,500, with another 1,500 in the independent sector.

He said: “The time has come to say that some of those remaining facilities are going to have to close and care is going to have to be provided in a more radical way.

“It’s the imbalance in power [in the health and social care system] which explains why we allow these things to be perpetuated, and that’s got to change.”

Stevens said there would now be a “planned transition programme” of NHS closures, particularly in the north-east and north-west of England and “some parts of the Midlands”, while there would need to be efforts made by commissioners not to allow a situation where “we reduce NHS provision and it just flows over into third-party providers that expand on the back of it”.

But Gary Bourlet, co-development lead for People First England, said afterwards that he was unhappy that the NHS would only be closing “some” of the units.

He said: “There will still be lots of people left in these units. We have been trying to close long-stay institutions for a long time.

“Closing institutions has been talked about since the 1940s. I think it is long overdue. I think that we will [still] be saying this in the next 10 years, still closing long-stay hospitals or institutions. It’s all too slow.”

He added: “I have got past the frustration and anger stage. These people can’t or are too frightened to speak up for themselves and can’t fight back.

“These people with learning difficulties and autism and other disabilities should be supported to live back in the community, near families, with more community learning disability nurses.”

He said there should be a “buddying system”, which provides them with extra support, while advocacy should play a “huge part in helping people re-establish themselves back into the community”.

Bourlet added: “Having people locked and staying in buildings should be a thing of the past.

“All the money wasted on these type of buildings should go back into the community and supporting people to live there.”

He said he was still waiting for a promised meeting on the issue with the Liberal Democrat care and support minister Norman Lamb.

Campaigners have been attempting to persuade the government to close long-stay hospitals for people with learning difficulties since the late 1940s.

In 1951, the National Council for Civil Liberties released a report describing the regime brought in by the 1913 Mental Deficiency Act – which would eventually confine hundreds of thousands of people with learning difficulties to long-stay NHS hospitals – as “one of the gravest social scandals of the twentieth century”.

And the Department of Health and Social Security announced in a white paper as far back as 1971 that long-stay hospitals should gradually be closed down.
Brothers’ Cambridge Union speech contrasts UK with US ‘hostility and bigotry’

The disabled woman hoping to become the first transgender person to be elected to parliament has spoken of her battle to win an apology from The Sun newspaper, in a speech to an historic university debating society.

She was speaking as part of the bi-centennial celebrations of the Cambridge Union – the oldest continuously running debating society in the world – which this term will also hear from speakers including former US vice-presidential nominee Sarah Palin, journalist Jon Snow and composer Stephen Sondheim.

Brothers focused for much of her talk on the need for effective press regulation, following offensive remarks made about her by Sun columnist Rod Liddle, and The Sun’s refusal to apologise, after she had come out in the media as a gay woman with a transsexual history.

She told the union yesterday (11 February): “Regulation must be independent, effective, authoritative, above all fair.

“It needs to recognise that individuals can often be isolated by powerful vested interests.

“In my case, I’m trying to balance the expectations of people from the transgender community and wider public who are concerned, whilst grappling with a powerful newspaper and reassuring a political party which would rather not have one of their candidates in conflict with The Sun just before an election.”

She also said that she had been impressed by the UK reaction to her coming out about her gender history.

But she said that her story had been received in the US – in online comments on an interview with the website The Daily Beast – with “hostility and bigotry”.

Brothers said after her speech, and a subsequent question and answer session, that it had been “really encouraging to hear so many young people talking passionately about mainstream politics as well as embracing LGBT issues”.

She said: “I was particularly struck by the younger generation being focused on non-gender binary issues, with quite a few of them neither identifying as male nor female.”

She added: “This is the new frontier for equality that I think will seriously gain traction in coming years.

“I look forward to observing progress, whilst hopefully helping in some small way to bring about a greater understanding and acceptance for this group.”

Brothers will be standing for Labour against the Liberal Democrat former minister Paul Burstow in the Sutton and Cheam constituency in south-west London in May’s general election.

She told Disability News Service last year that she has experienced far more discrimination as a blind person than she has as a transgender woman – she began living full-time as a woman in March 2007, and received a gender recognition certificate in October 2009.

Brothers is a former programme head of the Equality and Human Rights Commission, where she specialised in health and local government, previously worked at the Disability Rights Commission and RNIB, and is a former president of The National Federation of the Blind.
Council criticised after dodging A-boards ban

Disabled campaigners have criticised a council’s refusal to ban all advertising boards from blocking its city’s pavements.

City of York Council’s cabinet decided this week to introduce only a partial ban on so-called A-boards – free-standing, A-shaped boards used to advertise goods and services – even though campaigners had warned councillors that they obstructed many disabled people and were a “barrier for participation in public life”.

York Independent Living Network (YILN), York Blind and Partially Sighted Society and RNIB all back a total ban, similar to the one introduced by Hackney council, in London.

In a briefing note for councillors, YILN argued that banning the use of A-boards would give disabled people, particularly those with visual impairments, the confidence to move around the city freely.

But YILN said that introducing only a partial ban would increase anxiety and could keep people away from shopping areas, while it would reward traders for “bad behaviour”, rather than supporting those who followed best practice and refused to use A-boards.

One council manager had previously argued that while a total ban “would benefit the appearance of the city and the safety of the partially-sighted, there would likely to be an adverse consequence to the small business community”.

A group of councillors who subsequently carried out a review, recommended allowing the use of A-boards under “strict criteria”, but banning them from streets with narrow pavements.

That report acknowledged that it was “essential for all people including those in wheelchairs or with pushchairs, and the blind and partially sighted to have a clear route along a pavement”.

It added: “Without this, many people will walk into A-boards and injure themselves, or inadvertently walk into the road whilst attempting to avoid an A-board.”

But the council’s cabinet agreed this week to commission new guidelines on the use of A-boards across the city, including a ban on their use in areas with narrow pavements, but rejected calls for a total ban.

A council spokeswoman said the decision not to go ahead with a total ban had been taken “due to the difficulties in enforcing previously agreed guidelines”.

News provided by John Pring at www.disabilitynewsservice.com

Lib Dems silent on assisted dying, Governments Sanctions scheme questioned, Political parties must improve access, Taxis charge more for wheelchair users

Hello everyone. An interesting start to the week for me. 

On Monday I completed my time as the Chair of Disability Rights UK. I have been chair for over three years and as some of you know, before that I was chair of RADAR. Ten years is long enough and it’s now time for new people to take up the reins. Asif Hussein is taking over as Chair and I know that he will continue to grow and develop the organisation, which plays such a vital role in campaigning for the rights of disabled people. I shall miss everyone at DRUK, it has been a real privilege working alongside some extraordinarily dedicated, hard working and loyal people.

On a totally different subject my wife is off to India for two weeks. She’s going with a group of people who will be touring and singing in and around Kerala and she’s bound to have a great time.

I haven’t had to live on my own for thirty eight years so this is going to be an interesting experience. All the domestic chores will be down to me, no more pampering. My kids have wisely bought inaccessible houses so no chance of disabled dad moving in for a couple of weeks. Offers of Sunday lunch would be nice though!

I’ll let you know how I get on! Anyone take in washing?

Finally just to let you know that an audiobook version of our book “Why are you pretending to be normal?” is now available from Amazon. It is read by Dave Rees and it has music and lyrics written by Steve Hillman, Dave Rees and me. Hope you you enjoy it. Click this link to download a copy. http://www.amazon.co.uk/Why-Are-Pretending-Normal-Unabridged/dp/B00N9R8LIY/ref=tmm_aud_title_0

Have a great week.

News Roundup

Lib Dems silent on assisted dying bill, despite goal of ‘zero suicide NHS’

The Liberal Democrats have refused to say whether setting a new “ambition” for “zero suicides” in the NHS would be compatible with proposed laws that would legalise assisted suicide.

Nick Clegg, the party leader and deputy prime minister, said at this week’s launch of the new policy: “This isn’t about blame. It is doing more in every area of our society to ensure that people don’t get to that point where they believe taking their own life is their only option.”

Clegg’s call for all NHS trusts to commit to a new ambition for zero suicides in the health service came only three days after peers continued the committee stage of the Labour peer Lord Falconer’s assisted dying bill in the House of Lords.

The assisted dying bill would make it legal for doctors to help end the lives of those they judged to be terminally-ill, if the individual requested such help.

Disabled activists campaigning against legalisation, from Not Dead Yet UK (NDY UK), say the new Liberal Democrat policy shows the party is guilty of hypocrisy for not speaking out against attempts to legalise suicide for those who have life-limiting conditions, while now calling for more to be done to prevent suicides among those with mental health conditions.

The disabled crossbench peer Baroness [Jane] Campbell, a leading member of NDY UK, told fellow peers during the debate that the coalition’s existing cross-departmental suicide prevention strategy defines suicide as “a deliberate act that intentionally ends one’s life”.

She said: “In the light of this definition, will the minister inform us whether, if the bill were to become law, he anticipates a rise in the suicide rate, and would he expect the suicide prevention strategy to contain measures to reduce the numbers in this group intentionally ending their own lives?”

Lord Faulks, the Conservative justice minister, told peers in response: “I should tell the committee that we have collected no evidence about the effects this bill could have on suicide rates, were it to be enacted, but nothing about the bill in any way compromises the cross-department suicide prevention strategy.”

Although there is not enough parliamentary time for the bill to become law before May, it is almost certain that Lord Falconer, or another parliamentarian, will reintroduce it after the general election.

Baroness Campbell also told peers that “not a single organisation of disabled or terminally ill people is actively campaigning for this legislation”, while “growing numbers of national charities are coming out to campaign against it”.

And she warned fellow peers that others were not as fortunate as she had been “in the medical care that they receive, in the support that they get from their families and in the social care available to them to help them live with serious illness and disability”.

She said: “We need to remember that, especially now, when economic austerity has diminished the quality of care and support that one can expect…

“Many seriously ill people’s experience of life is not about exercising autonomous control; it is more about being done to than doing. The bill has all the makings of a law for the strong at the expense of the weak.”

But the disabled crossbench peer Lord Low, who supports legalisation, said he believed that Baroness Campbell’s fears that the bill would allow disability to be “equated with terminal illness and that [disabled people] will be made the subject of ‘do not resuscitate’ notices” was “misplaced” and “misconceived”.

He said that a disabled person would have to ask “before they can be offered the facilities of this bill to end their life”, and would “need to make an act of conscious choice before they avail themselves of these facilities”.

He said: “With all the safeguards in the bill, it will actually make the situation of disabled people better.”

And he said that a YouGov poll found that four in five disabled people “support assisted dying for adults of sound mind with a terminal illness”.

But Baroness Campbell reminded peers that activists from NDY UK UK – at least six of whom were terminally-ill – were outside parliament in the “freezing cold” to protest about the bill.

She added: “With the greatest respect, many people who are campaigning for this measure have not experienced these issues.

“They are people in control of their lives. They are people who fear becoming what they see us as.

“So I ask, please, that disabled people should be very much a central part of this debate.”

The Liberal Democrats have so far failed to explain how their “zero NHS suicides” target would be compatible with the assisted dying bill, if it ever became law.

A Liberal Democrat spokesman said the new zero suicides target was “about doing more in every area of our society to ensure that people don’t get to that point where they believe taking their own life is their only option”.

He added: “Separately, Liberal Democrats believe that there should be a free vote held in parliament on the issue of assisted dying, where parliamentarians have the opportunity to vote in line with their own views on this issue.“

But the party has so far refused to say whether its new target suggests that only some lives are worth saving, and if the target would be incompatible with an assisted dying bill.
Evidence mounts in case against government’s sanctions regime

Disturbing fresh evidence emerged this week that the government’s strict sanctions regime is harming the health and wellbeing of many out-of-work sick and disabled people.

A series of media reports and research publications, as well as an evidence session before MPs, highlighted the pressure imposed on civil servants to refer claimants – many of whom are disabled – to have their benefits stopped temporarily.

It follows reports by Disability News Service on concerns that Department for Work and Pensions (DWP) staff are failing to take the correct precautions when “vulnerable” people are about to have their benefits sanctioned.

DNS has also revealed that DWP has carried out 60 secret reviews into benefit-related deaths since February 2012.

Although coalition ministers have consistently denied any connection between their welfare reforms and cuts and the deaths of benefit claimants, there have been numerous reports of disabled people whose deaths have been linked to the social security system, including DWP’s use of sanctions to temporarily remove benefits from claimants.

On Wednesday, nine experts gave evidence to the Commons work and pensions select committee for its inquiry into benefit sanctions policy, which is particularly looking at how the Welfare Reform Act 2012 strengthened the sanctions regimes for both jobseekers allowance and employment and support allowance (ESA).

Alison Garnham, chief executive of the Child Poverty Action Group, read an extract from a guide for DWP decision-makers (DMs), which revealed that “it is assumed that health would be harmed by a sanction”.

The guide says: “It would be usual for a normal healthy adult to suffer some deterioration in their health if they were without essential items such as food, clothing, heating and accommodation, or sufficient money to buy sufficient items, for a period of two weeks.

“The DM must determine if a person with a medical condition would suffer a greater decline in health than a normal healthy adult and would suffer hardship.”

Dr Kayleigh Garthwaite, a research associate at Durham University, had submitted a written statement to the committee describing the effects of sanctions on people in Stockton-on-Tees who were already in poor health, particularly those with mental health conditions.

She described one woman, who was 22 weeks pregnant and had walked more than two miles to a food bank because she couldn’t afford to take a bus.

She was receiving ESA because of a mental health condition triggered by giving birth to a stillborn child, but was sanctioned after missing a single jobcentre appointment, despite letting her adviser know she would not be able to make the appointment.

Garthwaite described how the sanction worsened the woman’s mental health, and increased her debts.

At one stage she had not eaten a proper cooked meal in more than two weeks and was living on leftovers from meals eaten by her sister’s children.

She could not afford electricity and so her fridge and cooker had not been switched on for three weeks, and she had sold her television because she could not afford to use it.

Garthwaite described another woman, who had digestive and mental health problems, and was sanctioned after missing a jobcentre appointment, and told her: “Because of the anaemia, my energy levels are so low I nod off regularly, and towards the afternoon I don’t have energy to do the housework.

“I’m not unintelligent, I know what I need to keep my levels going, I know what I need for my diet, but it’s hard to keep that going when you’re left eating just bread with chocolate spread on it and that’s all you’ve got for the day.”

Mark Serwotka, general secretary of the Public and Commercial Services Union, told the committee that the union’s survey of Jobcentre Plus advisers and decision-makers found 70 per cent did not think sanctioning helped claimants find work, while three in five (61 per cent) felt there was pressure on them to refer claimants for sanctions.

Meanwhile, an investigation into the government’s benefit sanctions regime by BBC Radio 4’s File on Four interviewed a Jobcentre Plus whistleblower, who said: “Every opportunity with a customer was an opportunity to sanction.

“We were encouraged to view the customer as the lowest of the low. It didn’t matter what they’d done. The fact that they were claiming benefit meant they were up for some special treatment.”

He said staff were encouraged to target all claimants and “set them up to fail, make life difficult for them”.

DWP told File on Four that it had investigated and found no evidence to back up his allegations.

File on Four also reported new data obtained by researchers for the Methodist Church, using Freedom of Information Act requests to DWP, which found that ESA claimants judged not fit for work because of mental health conditions were more likely to have their benefits stopped by sanctions than those with other impairments.

In March 2014, according to the figures, about 4,500 ESA claimants with mental health conditions were sanctioned.
Political parties ‘must act’ on accessible offices

Every political party should ensure that its MPs only rent constituency offices that are fully accessible to disabled people, campaigners have demanded.

They spoke out after a series of Disability News Service reports that revealed three ministers with equalities responsibilities – Mark Harper, Jo Swinson and Iain Duncan Smith – have inaccessible constituency offices.

Deborah King, co-founder of Disability Politics UK, which campaigns to address the under-representation of disabled people in public and political life, said: “Physical access to MPs’ constituency offices is vital if we are to get more disabled people into politics.

“It is not good enough to say, ‘We hold surgeries at accessible locations.’

“Disabled people have the right to participate as volunteers as part of a progression towards paid work in politics. Disabled people have a right of access to politics.

“All party leaders need to make a commitment to getting their MPs’ constituency offices accessible as soon as possible.”

Linda Burnip, co-founder of Disabled People Against Cuts, said: “MPs not having accessible constituency offices not only prevents disabled people exercising their access to democratic processes but excludes them from the opportunity of gaining the skills from employment that are needed to lead onto a political career.

“It is therefore essential, if politicians are serious about more disabled people becoming engaged in politics, that MPs must not only have an accessible constituency office but one where disabled people could also work as well.

“If necessary, the extra expenses MPs need to cover any extra costs for this should be provided and MPs who do not have accessible offices should be financially penalised until they move to accessible premises.”

Meanwhile, Labour MEP Richard Howitt, co-president of the European Parliament’s all-party disability rights group, added his voice to calls for parties to take action to ensure their MPs’ constituency offices were accessible.

He said: “People in public office have a duty to lead by example and ministers with responsibilities for disabled people are clearly failing in their duty in even the most rudimentary terms to ensure full access.

“They should be providing moral leadership and doing what is right, and to put up barriers to disabled people is absolutely wrong.

“I would appeal to all new MPs elected in May when they first decide where to establish their constituency offices, to first choose accessible offices.”

Although he said access in his own constituency office was not perfect, he said he had made “painstaking arrangements” to improve it, which has meant he has been able to employ a blind person and someone with a physical impairment.

He said: “If I can do it, I hope others can do it as well.”

But he admitted that his office was not fully accessible. Although there is a ground-floor area where staff can come downstairs to see wheelchair-users or others with mobility impairments, most of the office space was up a flight of stairs.

He added: “Am I frustrated and impatient about lack of progress and change? Yes.

“That is why I am campaigning vociferously for access laws to speed up the change.”

Howitt and the all-party group are pushing the European Commission to publish a long-awaited draft European accessibility act.

Such an act would complement Britain’s Equality Act by making existing voluntary European access standards mandatory across the European Union.

Howitt said: “Although I am proud of the progress we have made in forging European access rules in relation to the installation of lifts, for some public transport and on the internet, the bitter truth is that the large swathe of the built environment remains a ‘no go’ area to disabled people.”
Taxis ‘are discriminating’ by charging higher fees to wheelchair-users

Many taxis are breaching equality laws by charging wheelchair-users extra to use their services, say disabled campaigners.

People First Keighley and Craven (PFKC) is campaigning for private hire vehicles in the Bradford area to stick to the law.

PFKC members say that Hackney carriages cannot overcharge, but many private hire vehicles do, and they say this must stop.

They have already forced taxi companies that were charging wheelchair-users double the normal rate to cut this to one-and-a-half times the usual fee, but they say this is still not good enough.

Private hire firms were warned two years ago – following a PFKC campaign – that they risked prosecution if they carried on overcharging.

But Tom Walsh, a campaign worker for PFKC and himself a wheelchair-user, said the overcharging is continuing and is widespread in the Bradford area.

He said he was “annoyed” about this, and added: “They can charge what they want. They set their own prices.

“I just felt a bit ripped off. Especially when I did mystery shopping and found out from some people I was using that they were charging me double. I felt discriminated against.

“It’s not just me – it’s everyone in wheelchairs. When I have mentioned it to other wheelchair-users they didn’t even know they were being overcharged.”

Geoff Binnington, principal officer for Bradford council’s fleet and transport services, said: “We have heard about some operators allegedly using discriminatory fares, but have seen no evidence to support this.

“We work closely with both disability groups and operators to ensure both are aware that fares should not discriminate.”

He said the council had commissioned a report to examine the issue of overcharging, but he added: “We have no legal control over fares set by private hire operators – this is something they themselves decide.

“We would also advise people to always agree a fare before a journey commences.”

But he said that private hire companies – including drivers and employees – have to abide by the council’s own public sector equality duty, under the Equality Act.

This means the council has to have “due regard” to eliminating unlawful discrimination, harassment or victimisation; advancing equality of opportunity; and fostering good relations between groups such as disabled people, minority ethnic communities, older people, and those who do not share such “protected characteristics”.

Stuart Hastings, chair of Keighley Private Hire Association and boss of Metro Keighley Taxis, said his company kept strictly to the law and did not charge wheelchair-users extra.

But he said that his company’s wheelchair-accessible minivans have electric tail lifts, which meant they were much more expensive than standard private hire vehicles, while he claimed that it often took twice as long to complete a job if the passenger was a wheelchair-user.

Hastings said: “The law says you cannot charge anything extra for someone in a wheelchair.

“There is right and wrong, and then there is the law, and the law says we cannot do that, so we don’t. Some other companies do.”

News provided by John Pring at www.disabilitynewsservice.com

IDS and the inaccessible office, Assisted suicide protest, DWP benefit sanction rules, Access to Work crisis, Bedroom tax appeal goes ahead, ODI’s future questioned, New Years Honours, ILF closure, Alice Maynard Honoured

Welcome to 2015. I hope you had a good time over the Christmas holiday and that 2015 is a peaceful and prosperous one for you all.

I’m writing this on a train while travelling up to Glasgow and am reminded that the price of an annual season ticket is to increase in the next few weeks. This increase is necessary, we are told, because of the need to maintain and improve the rail infrastructure. Predictably long suffering rail commuters spoke out against the increase but are, no doubt, resigned to the inevitable. We are told that if we want a reliable and efficient rail system then they will have to pay for it.

At about the same time as the fare increase announcements, our newspapers were full of stories about long wait times for ambulances, A&E departments awash with casualties, people in corridors lying on trolleys for hours while waiting for beds. This prompted me to think, why can’t we apply the same principle used to justify increased rail fares to health and social care? Let’s increase taxation and invest the money in improving the system. When was the last time any political party suggested this as an option?

It seems to me we have a choice to make. We can either accept massive cuts in health and social care spending and stop moaning about older people dying on hospital trolleys, or we can all agree to pay higher taxes to fund improvements to health and social services. Am I the only person who thinks like this? What do you think?

Here’s some news which might be of interest.

News Roundup

Iain Duncan Smith facing ‘hypocrisy’ claims over inaccessible office

The architect of the government’s sweeping welfare reforms is facing accusations of hypocrisy, after becoming the third minister with responsibilities for disability equality to be shamed over an inaccessible constituency office.

Work and pensions secretary Iain Duncan Smith has been the key figure behind the coalition’s attempts to force disabled people off out-of-work benefits, and has spoken of wanting to see a society that “uses all its talents”, with businesses sharing best practice on employing disabled people.

But to enter Duncan Smith’s constituency office in Station Road, Chingford, north-east London, visitors need to negotiate a double doorstep and then climb a flight of stairs.

A volunteer who answered the front door leading to the rented first-floor offices, the headquarters of Chingford and Woodford Green Conservative Association, told Disability News Service (DNS) that the association could not afford to rent accessible premises.

She said: “That was a decision we had to take when we had to rent premises in order to cut costs.

“We have never had premises that have not been upstairs. The costs of obtaining such premises on a ground-floor level – they are very difficult to find – isn’t open to us.”

She also suggested that there would be security considerations if they rented ground-floor premises on the high street.

The conservative association volunteer, who declined to give her name, said that being in Station Road, a busy high street, was a good choice because it was “accessible to most people”.

She said: “They can get here by bus and train. We have to think what is best for our constituents as a whole.

“I am not saying our disabled constituents are not important – we would always make alternative arrangements for them if needed.”

She said the association had moved to the offices five years ago, in 2009, before the last general election.

And she said there were handrails on the stairs that lead to the two offices, and added: “We are only on the first floor. We couldn’t take an office on the second floor because we realised that would make it absolutely impossible.”

Duncan Smith is the most senior of three coalition ministers to have been embarrassed so far over an inaccessible constituency office.

Last month, the Conservative minister for disabled people, Mark Harper, refused to answer a string of potentially embarrassing questions about his inaccessible constituency office in Gloucestershire.

Jo Swinson, the Liberal Democrat minister for women and equalities, is also facing similar questions over her constituency office in East Dunbartonshire.

Last year, at the Working Together conference in London – which launched the government’s Disability Confident campaign – Duncan Smith told delegates: “For too long, then, we have let individuals’ potential go to waste and allowed people to believe that their talents were simply not valued or even not valued enough.”

He added: “There’s never been a better time to be disability confident.”

Linda Burnip, a co-founder of Disabled People Against Cuts, said: “Hypocrites like IDS and Mark Harper say disabled people should be in work and not reliant on benefits, yet at the same time they make absolutely no effort to have accessible constituency offices.

“Not only does this prevent disabled people from accessing any services they might provide to non-disabled constituents, but it also ensures that they never even have to consider employing a disabled person, or provide them with the opportunity to gain the kind of experience and skills that could lead to them achieving elected office themselves in the future.

“Clearly they prefer disabled people to be kept firmly out of sight, out of mind, and out of politics.”

Dame Anne Begg, the disabled Labour MP for Aberdeen South and chair of the Commons work and pensions committee that monitors the work of Duncan Smith’s department, said: “I don’t think it is good enough.

“I believe that MPs’ offices should be accessible, not just for public access but so they can be good employers and open up their offices to people with disabilities as well. That should be a basic requirement.

“It would be a good learning experience for them and perhaps they could have a bit more understanding of some of the difficulties disabled people have in trying to get into the workplace.”

Dame Anne, who is a wheelchair-user herself so has to have an accessible constituency office, said: “If we are serious about equality and open access then no MP should be even considering renting an office that is not wheelchair-accessible.”

But she said that renting an accessible office would probably mean an MP having to pay more rent.

Dame Anne said this would be difficult for some MPs because the new Independent Parliamentary Standards Authority (IPSA) “demands that you have to have the cheapest office you can get”.

She called for new IPSA guidance to state that “it is not acceptable for MPs to have an office that is not accessible”.

But an IPSA spokesman said: “We don’t force MPs to take the cheapest office. We do provide a budget for MPs, and of course that is not limitless.

“We are absolutely clear that if an MP rents an office and there is some work that needs to be done to make it accessible to wheelchairs or others, then we will support that.

“Do we issue guidance that says all offices should be on the ground floor? The answer to that is no.”

He said MPs had to use their own “discretion” when they rented their offices, and “apply a judgement” as to whether they rented more expensive offices in the centre of town or cheaper facilities further out, or whether they chose larger or smaller offices.

It is not the first time that Duncan Smith has been accused of hypocrisy after a clash between his public statements and private behaviour.

Three years ago, DNS reported how he was caught using an accessible toilet, just minutes after telling a live television audience that parents must teach their children “right from wrong”.

Rikki Williams, Duncan Smith’s agent, said: “Any constituent who wants to contact Iain can do so either via the telephone or email.

“If they want to meet with Iain he can meet anyone at a number of locations, at home, at a café or in the association office.”

Asked how a wheelchair-user could play a full part in the constituency association, work as a volunteer in the office, carry out paid work for Duncan Smith, or visit the office for any other reason, and whether Duncan Smith thought it was acceptable for an MP to have an inaccessible constituency office, he refused to comment further.
Protesters’ picture perfect response to Falconer’s bill

Disabled activists were outside the House of Lords today (Friday) for a highly personal protest about the latest attempts to legalise assisted suicide.

As peers continued the committee stage of Lord Falconer’s assisted dying bill, protesters from Not Dead Yet UK (NDY UK) made their voices heard outside parliament.

But they also displayed 80 hard-hitting placards featuring the message: “Assist Us To Live Not Die.”

Each placard includes the name and picture of a disabled or terminally-ill person whose impairment has prevented them from attending the protest, and a message explaining why they oppose the bill.

One of them, Chris, says on his placard: “I have a job, I have family, I want to live, NOT BE KILLED OFF!”

Another, Meghan, says: “House of Lords: If your laws have not stopped discrimination against disabled persons in everyday life, then they will not stop discrimination in the practice of assisted suicide.”

Deborah says: “I live with chronic pain. I feel devalued when told this is a reason to die.”

Performer John Kelly says on his placard: “We gotta fight for the right to live… to rock n’ roll… to party, not die. Give us our basics, and we’ll show ya, life’s worth living.”

Another performer, comedian Laurence Clark, says: “Throughout my life, doctors’ negative prognoses about me have consistently proved wrong.

“So it’s not a good idea to legalise ending people’s lives on the basis of such wisdom.”

Activist Lisa Egan says: “I want access to the same suicide prevention measures and mental healthcare available to people who are physically healthy. Not to be offered assisted suicide instead.”

Dennis Queen, a leading NDY UK member, says on her placard: “I need help like everyone else, not euthanasia!”

And Liz Carr, the actor and performer who is also playing a key role in the NDY UK campaign, says on her placard: “To prevent even one innocent life being lost, capital punishment is no longer legal in the UK.

“How then can we justify state assisted killing of ill and disabled people in the UK? Kill the Bill – Not Us!”

Lord Falconer’s assisted dying bill would make it legal for doctors to help end the lives of those they judged to be terminally-ill, if the individual requested such help.

NDY UK said that “celebrity supporters” of the bill were well-known but politicians needed to “hear and value the opinions of people living with terminal illnesses and severe disabilities”, because the proposed legislation would put lives at risk, while the safeguards contained in the bill were inadequate.

NDY UK member Sian Vasey added: “When people ask to be assisted to die, this is often in isolation and before everything possible has been done to alleviate their situation in terms of medical, social and emotional support.

“Fears for the future are the most common reasons for a person to request assisted suicide.”

Reports this week suggested that the pro-assisted suicide organisation Dignity in Dying (DiD) would not be staging a counter-demonstration outside the House of Lords, but would rely instead on social media to make its case.

NDY UK members had been concerned at what they say was aggressive behaviour by DiD supporters at a protest outside the Lords on 7 November, during the first day’s discussion of the bill’s committee stage.

One disabled protester was allegedly hit with a fist, others were intimidated and verbally abused, while some pro-euthanasia campaigners apparently encouraged drivers to run over disabled activists who were blocking the road in a peaceful direct action. The claims were denied at the time by DiD.

Meanwhile, disabled campaigners in Scotland staged their own protest outside the Scottish parliament, as MSPs on the health and sport committee discussed a bill originally devised by the late MSP Margo MacDonald.

Her assisted suicide (Scotland) bill is now being spearheaded by the Green MSP Patrick Harvie. His party’sofficial policy is to legalise assisted suicide.

The committee was holding the first of several sessions in which it will take expert evidence on issues such as the law, ethics and palliative care, and hear from disability organisations, including Inclusion Scotland.
New questions over safety of DWP’s benefit sanction rules

A minister is facing fresh questions over whether her department is failing to take suitable precautions when a “vulnerable” person is about to have their benefits sanctioned.

Esther McVey, the Conservative employment minister, caused alarm and confusion in November after she told her Labour shadow that it was not government policy to warn health or social services when vulnerable service-users were sanctioned.

Under current sanctioning rules, claimants lose at least a week’s benefit for missing a single appointment or session of work-related activity.

McVey told Stephen Timms in November in a written answer: “There is no formal policy to liaise with Health and Social Service agencies when a sanction is applied.”

Disabled activists told Disability News Service (DNS) at the time that her response was “appallingly callous”, and “makes a mockery of the government’s claim that sanctions policy is intended to move people into work for their own wellbeing”, while one campaigner said the failure “amounts to passive euthanasia”.

Earlier in November, DNS had revealed that the Department for Work and Pensions (DWP) had carried out 60 secret reviews into benefit-related deaths since February 2012.

Coalition ministers have consistently denied any connection between their welfare reforms and cuts and the deaths of benefit claimants.

But there have been numerous reports of disabled people whose deaths have been linked to the employment and support allowance (ESA) claim process, the refusal or removal of ESA and other benefits, and the DWP’s use of sanctions to temporarily remove benefits from a claimant. Many of these cases involved people with learning difficulties or mental health conditions.

DNS has now learned that there are procedures that DWP civil servants are supposed to follow when a “vulnerable” person is about to have their benefits sanctioned, particularly if they have learning difficulties, mental health conditions, or “health conditions which affect cognition”.

These “core visit” procedures state that benefit recipients who are seen as “vulnerable” and have failed to attend a work-focused interview or carry out work-related activity without “good cause” must receive a “core visit” from a DWP visiting officer before any sanction is imposed.

If they are unable to make contact with the claimant, DWP must “attempt to contact” the claimant’s representative or next of kin, their psychiatric nurse, social services or the police in order to “establish the claimant’s welfare”.

Only after these steps have been taken should a sanction should be considered.

But in a submission to the Commons work and pensions committee’s newly-launched inquiry into benefit sanctions, Disability Rights UK says there are “serious failings in the scope and application of the safeguards”, which were introduced in 2000 following the death of a man with schizophrenia.

The coroner in that case concluded that “neglect by the Benefits Agency had contributed to the death and suggested that the Benefits Agency should have special rules for those suffering from mental illness”.

But DR UK highlights in its evidence to the inquiry that there are “a number of problems” with the safeguards that were introduced in 2000.

The rules only apply to claimants of ESA, the out-of-work disability benefit, and not to disabled people claiming the mainstream jobseeker’s allowance, many of whom will have learning difficulties or mental health conditions.

DR UK also warns the committee that records on claimants’ vulnerability do not appear to be accessible to all relevant DWP staff, and “are not enshrined in legislation”.

A DWP spokesman said the Timms question had been “interpreted” by McVey to mean measures taken after a sanction was imposed, rather than before, which is why the minister said in November that there was no formal policy in place to warm health or social services when a vulnerable person was sanctioned.

He said in a statement: “The policy is being properly applied, and relates to how we support vulnerable people before any sanction is applied.

“We make every attempt to support vulnerable claimants who aren’t fulfilling their commitments to taxpayers to do the right thing so they don’t face a sanction.

“This can include home visits, especially for people with mental health conditions or learning disabilities.

“When we have tried twice without success to visit someone in their home, we would then contact either a family member, Community Psychiatric Nurse, Social Services or the police.”

A spokesman for Timms said that a “common sense” reading of his question was that it referred to measures taken before a sanction was imposed, and not afterwards.
Access to Work crisis: Claimants face court action over unpaid bills

Disabled people are being threatened with legal action by a company exasperated by the government’s failure to pay invoices agreed through its Access to Work (AtW) scheme.

One self-employed AtW claimant, Jane*, has told how ergonomic office furniture suppliers Back Care Solutions warned her and other claimants whose invoices had not been paid by AtW that they faced being taken to court.

The purchase of a piece of office equipment to help Jane at work had been agreed with AtW, and the furniture was delivered two months later by Back Care.

But several months afterwards she received an email from Back Care threatening her with legal action over the unpaid invoice.

And AtW – which provides funding to support disabled people faced with barriers in the workplace – is failing to respond to Jane’s increasingly desperate attempts to persuade it to pay the invoice.

She said: “I don’t want to have to go to court. The way [Back Care] put it in the email they sent was that the invoice had not been paid and they are trying to run a business and that AtW is one of their main clients.”

DNS has learned that the company has threatened similar legal action against other AtW claimants, although Back Care will not confirm how many individuals are affected.

A Back Care spokesman said: “It isn’t really something we want to comment on. If it is to do with Access to Work invoices not being paid, that is something for AtW really.

“It is something between AtW and the company that they are paying the invoices for or on behalf of. It is not something we would want to comment on.”

There are concerns that other companies – also losing patience with the administrative problems at AtW and its failure to pay its bills – might also be threatening legal action against AtW customers over unpaid invoices.

So far, DWP has not commented on the concerns.

Over the last year, DNS has run a series of stories on disabled people concerned about AtW administrative problems, delays and cuts to funding.

Last month, the Commons work and pensions committee concluded that AtW had been undermined by “poor administration”, and relied on “inefficient and outmoded paper-based processes”, while its new central call centre system “does not work well for many service-users”.

*Not her real name
Bedroom tax five win permission for Supreme Court appeal

Five disabled adults have won permission to take their legal battle against the government’s “bedroom tax” to the Supreme Court.

The five – including Jayson and Jacqueline Carmichael, from Southport – were seeking the hearing after a “baffling” court of appeal ruling last February that the new housing benefit regulations were lawful.

But it could take as long as 15 months for the appeal to be heard by the Supreme Court, although lawyers for the five are considering applying for an earlier hearing.

The court of appeal ruled last year that the Department for Work and Pensions (DWP) regulations – referred to by the government as the spare room subsidy removal (SRSR) policy – do discriminate against some disabled people, but that this discrimination was justified, and therefore lawful.

The regulations, introduced in April 2013, mean that tenants in social housing are punished financially if they are assessed as “under-occupying” their homes, with about two-thirds of those affected disabled people.

Many disabled people need extra rooms for impairment-related reasons, or find it impossible to move to smaller accommodation because of the shortage of accessible, affordable properties.

But the judges ruled that the needs of disabled people subject to the bedroom tax were being met by the payment of discretionary housing payments (DHPs) – extra funds provided by the government to local authorities to distribute – and that for disabled people who needed an extra room, their need for help with their rent was better dealt with by DHPs than housing benefit.

The government believes that the SRSR regulations should apply to disabled adults who need their own bedrooms for impairment-related reasons, even though disabled children in similar situations are now exempt.

Linda Burnip, co-founder of Disabled People Against Cuts, said: “As at least two-thirds of those affected by bedroom tax are disabled people who have a range of important support and access needs which are being totally ignored by bedroom tax legislation, this case is of vital importance in ensuring disabled people’s rights are upheld.

“We know that the empty rhetoric that the ConDems espouse that disabled people’s needs will be met through the use of DHPs is simply another of their untruths and that many disabled people are having such payments refused.

“Added to those issues, the lack of available, affordable and accessible housing makes the bedroom tax particularly unjust for those who do have specific housing needs.”

Two law firms, Public Law Solicitors and Leigh Day, representing the five disabled adults, will take the legal challenge to the Supreme Court.

Anne McMurdie, from Public Law Solicitors, which represents three of the disabled adults, said: “On the government’s own figures, at least 440,000 disabled households are losing out as a result of the bedroom tax.

“There is compelling and growing evidence of the terrible adverse impact on disabled tenants, having to make the dreadful choice between paying the rent and buying food or heating their homes.

“Disabled tenants are not asking for special treatment, they are asking for housing benefit to be paid at a level which meets their needs – for the same rights as others.

“Discretionary payments are not the answer.”
ODI’s future questioned after DWP refuses to calculate spending cuts

The future of the Office for Disability Issues (ODI) has been cast into doubt, after the government claimed it was unable to calculate how much of its budget had been cut since 2012.

The Department for Work and Pensions (DWP) has told Disability News Service (DNS) that it would be too expensive to work out how much had been spent on the ODI’s responsibilities.

In an answer to a DNS Freedom of Information Act request, the DWP claimed it would take more than three-and-a half working days to calculate the figures.

The ODI has its own web page and is responsible for supporting the cross-government role of the minister for disabled people; developing and monitoring the government’s disability strategy; and coordinating the cross-government implementation of the UN Convention on the Rights of Persons with Disabilities.

It also supports the government’s Disability Action Alliance and Fulfilling Potential Forum; strengthens disabled people’s user-led organisations; is responsible for the “Paralympic legacy”; oversees the Community Support Fund for disabled ex-Remploy employees; and encourages the use of the social model of disability,

But there have been growing concerns that the ODI is being downgraded in importance and might not survive another Conservative-led government.

Tracey Lazard, chief executive of Inclusion London, said: “The ODI has played a vital role in the past.

“It is charged with a very specific and important set of responsibilities. For them not to know how much they are investing in that unit is extremely surprising.”

She said there was a “growing sense” that ODI might not be around after the election, which would be “extremely concerning”.

She said: “It is more important than ever, given the disproportionate impact of cuts that disabled people have experienced over the last five years, that there is expertise working strategically and across government that understands disability equality and understands co-production and works with disabled people’s organisations.

“It is absolutely vital and there are huge question-marks about whether ODI has the resources and the capacity to do that.

“I know a lot of personnel that were really key to the success of the ODI have left over the last five years and I have heard anecdotally about significant reduction in the ODI staff capacity, and that seems to be reflected in the question marks [over its funding].”

DWP said in its Freedom of Information Act response that ODI became a division within its Disability Directorate in April 2012, and that “finance is managed at the directorate level using one cost centre code which does not allow for easy identification of any part of the directorate’s spend”.

In September 2014, it said, there was a further merger between the Disability Directorate and the Health and Wellbeing Directorate to form a new Health, Disability and Employment Directorate.
New Year Honours: Commons prepares to welcome second disabled dame

A former minister for disabled people is set to become the House of Commons’ second disabled dame – at least for a few months – after being recognised in the latest new year honours list.

Anne McGuire, the Labour MP for Stirling and a former minister for disabled people, has been recognised for parliamentary and political services, following the same honour awarded four years ago to her disabled Scottish Labour colleague Dame Anne Begg.

McGuire, who has a long-term health condition, is co-chair of the all-party parliamentary disability group, but is retiring as an MP at May’s general election, although she said she has not decided what she will do next.

Before her first election as an MP in 1997, she was deputy director of the Scottish Council of Voluntary Organisations.

She previously worked in an adult training centre and later managed employment programmes, before becoming national officer for CSV (Community Service Volunteers).

She also helped as a volunteer to establish a pioneering community housing scheme for adults with learning difficulties in the 1980s in her home town of Cumbernauld, a project which meant service-users were able to stay out of residential institutions.

She said: “I have always had the privilege of being able to do work that I enjoyed, all the way through my working life.

“I do things for the satisfaction of doing them. It’s not about my own self-esteem.”

She said she was “really very touched” by the “really nice reaction” to her damehood from many of the people and organisations she has worked with, including many disabled people and disability organisations.

She said: “I always felt I got a fair crack of the whip with people, maybe because of my experience before I came into politics.

“I tried always to make the time and understand why people had a particular point-of-view and I hope I always went the extra mile to try to do that.”

She said that being minister for disabled people had “brought together many strands of my life in the voluntary sector, working with disabled people, particularly people with learning disabilities and the whole equality agenda”.

She insisted that she had no idea why she had been singled out for a damehood, but she added: “I have always tried to do my best in whatever job I have done.”
Independent Living Fund: Minister’s ‘unbelievable’ failure to prove Commons boast

The minister for disabled people has been accused of an “unbelievable” and “very worrying” failure to prove his claim that disability organisations “agree with the government” on its policy to shut the Independent Living Fund (ILF).

Mark Harper told MPs last month that he had “talked to disability organisations… and they agree with the government” that the ILF should be closed and non-ring-fenced funding passed instead to local authorities.

But disabled campaigners strongly questioned his claims of support among disability organisations, and challenged him to name those who supported the government’s position.

In the wake of his comments, both Disability News Service (DNS) and Disabled People Against Cuts (DPAC) made requests under the Freedom of Information Act for the Department for Work and Pensions (DWP) to name these organisations.

This week, replying to those requests, DWP said it had “conducted a search” of departmental records and concluded that “the information you have requested is not held”.

DWP also said that the minister’s private office had confirmed that Harper “does meet regularly with a large number of disability organisations and holds a wide range of discussions, both formal and informal”.

These include monthly meetings with members of the Disability Charities Consortium, and attendance at the government’s Fulfilling Potential Forum.

But Harper’s team declined to say who the minister was referring to when he told MPs that disability organisations “agree with the government”.

Linda Burnip, who put in the Freedom of Information Act (FoIA) request on behalf of DPAC, said: “It’s very worrying that Mark Harper seems to have no idea who he has actually spoken to about disability issues and in particular who he has actually spoken to about the closure of the ILF.

“Regardless of not knowing who he has spoken to, he still claims that he has been told by someone or some organisation supposedly representing disabled people that closing the ILF will be a good thing to do.

“We know it is not the case that disabled people’s organisations have said this.”

She said that DWP won last year’s court case – which aimed to overturn the closure decision – “based solely on being able to prove that the previous minister for disabled people, Mike Penning, was fully aware of how damaging the closure would be to disabled people’s rights to live independently in the community”, so Harper’s failure to explain who he had spoken to was “unsatisfactory and highly dubious”.

Michelle Maher, from the WOWcampaign, said the FoIA response was “just unbelievable” because Harper had made a “clear claim” that disability groups had endorsed the government’s decision to close ILF and pass the non-ring-fenced funding to local authorities.

She said the fact that no names had been released “speaks volumes”, because DWP would have been “singing their names from the roof tops” if disability organisations were backing its policy.

The FoIA response came as about 100 activists – many of them ILF-users – marched in the rain on Downing Street, held up traffic in Whitehall, and then lobbied MPs, in a last-ditch bid to avoid the planned closure of the ILF on 30 June.

A meeting in Westminster Hall, organised by the Green MP Caroline Lucas, was attended by 19 MPs who expressed support for the campaign to save the ILF – a government-resourced trust which helps about 17,000 people with the highest support needs to live independently – including members of Labour, the Liberal Democrats, SNP, Plaid Cymru and the SDLP.
New Year Honours: Maynard hopes CBE will help her spread inclusion message

A leading consultant on inclusion is hoping that being awarded a CBE will help in her quest to push for change in mainstream organisations that will benefit disabled people across society.

Dr Alice Maynard is one of many disabled people recognised in the latest new year honours list.

Maynard, who is made a CBE for services to disabled people and their families, was chair of the disability charity Scope from 2008 to 2014, is a founding director of the Association of Chairs, and is founder of the consultancy Future Inclusion.

She said the recognition was “amazing” and “brilliant”, and was probably largely due to her work with Scope, which she said was a “good organisation” that is “making significant difference for disabled people and their families”.

One of her achievements, she said, was to work with the charity to ensure that its work was carried out more “co-productively” with disabled people.

She said she hoped the CBE was also recognition of her pioneering work in the transport industry, which dates back to her first piece of research in 1992.

But she stressed that progress in such areas was slow and halting. “You look at what you have achieved but you think, ‘It’s not there yet, it’s not good enough yet.’

“Some things that you do, particularly in the disability arena, get undone. A lot of what you do in disability and equality issues is really two steps forward and one step back, or even one-and-a-half or two steps back. That’s why it takes so long to achieve things.”

She added: “I am really grateful to the organisations that I have worked with, because you don’t get this kind of thing by your sole efforts.

“It is a reflection of the people I have worked with, the organisations I have worked with, the things we have done together, and so I am really grateful to those organisations right across the sphere that have enabled me to do really interesting stuff. In particular, I am really grateful to Scope.”

Maynard said she was “not a crusading campaigner” but instead was good at working with organisations.

She said she hoped the recognition might enable her to work with “some bigger, more mainstream organisations and make change happen there that really benefits disabled people across society and to create a fairer society because there is an awful lot of unfairness and injustice out there that needs dealing with”.

Elsewhere in the honours list, an OBE is awarded to Conservative MP Charles Walker, who was one of the MPs who spoke about their own mental health conditions in a Commons debate in June 2012.

He has campaigned and spoken out repeatedly on mental health issues, particularly around efforts to reduce stigma.

April Barrett, a board member of the Dwarf Sports Association UK, chair of Birmingham Disability Sports Forum, and previously a board member of the English Federation of Disability Sport for 10 years, receives an MBE for services to disability sport.

She still competes in the shotput and javelin at the National Dwarf Games, and held the British record for the shotput in the over-35 category for many years before it was finally broken two years ago.

She said: “I campaign for equality. We are all born equal so let’s try and make society equal in whatever way we can.

“I would like to think I have played a part in helping to get people on the road to enjoying life and seeing ourselves as just ordinary people.”

She said she was “dumbfounded” when she was told she was to be given an MBE, and said she saw it as “an award for every restricted growth person in the country”.

She said: “It is something someone with restricted growth has achieved instead of seeing someone in the circus or on television or in pantomime.”

John Jenkins, a retired Paralympian, at table-tennis, and a former national champion at swimming, also receives an MBE.

He is the long-standing president and founder member of the disability sports charity SportsAble, a grassroots sports and social club in Maidenhead, Berkshire, and is recognised for services to disability sport.

SportsAble said Jenkins had “played an integral part in promoting and sustaining disability sport” in the south-east of England, and described him as “the anchor that holds SportsAble steady”, and its “lead volunteer – in actions as well as in words – in fundraising, sporting events and plans for the future”.

Jenkins is playing a lead role in the charity’s plans to turn the club into a regional centre of excellence for disability sport.

Another disabled MBE recipient is Joe Fisher, a patron and founding member of the Newcastle branch ofThe British Polio Fellowship (BPF), who is recognised for his services to charity, particularly BPF.

Fisher, now 92, has devoted more than 60 years’ service to the charity, after joining at the age of 26 and establishing a branch in Newcastle.

Six years later his branch bought a building and converted it into a hostel and training centre, which allowed people with polio to live on-site while learning a new trade.

The charity said this was a “revolutionary idea in the 50s, later expanded and developed by governments and charities alike”.

Fisher was also one of the early UK pioneers of selling charity Christmas cards, and at its height a team of 30 people with polio were employed full-time, with a turnover that today would be worth £3 million-a-year.

He said: “People were fully trained in the role they performed and these skills allowed them to secure mainstream employment.

“We trained people in the print side, invoicing, banking, accountancy, packing, order receipt, you name it.

“Once they had the skills, they could get out into the community to live normal lives and get work.

“It was organised, paid for and run by those living with polio and to support those with polio who had nowhere else to turn.”

He said he was “stunned, humbled, but of course very, very happy” to be recognised with an MBE, but pointed out that “many people worked hard to make the Newcastle branch of The British Polio Fellowship such a success”.

Also receiving an MBE is Frank Letch, who is recognised for services to disabled people and the community in Crediton, Devon.

Among his many years of voluntary service, he has spent 18 years as a board member of the charity Reach, which supports children with upper limb difference.

He is currently an ambassador for Reach, fundraising and raising awareness through visits to schools and other organisations.

The retired languages teacher is also a former ambassador for the Jubilee Sailing Trust, a past chair of his local access group, a board member and coach with the British Association for Cricketers with Disabilities, and a volunteer with the visual impairment charity Devon in Sight.

Letch has been elected mayor of Crediton’s town council seven times, and plans to stand again at this May’s elections.

He said he was “surprised and pleased” to be recognised, and paid tribute to the support of his wife Natalia over the last eight years.

He said he hoped his MBE might lead to more invitations to deliver talks, particularly to those in business who should learn that they “must not judge the book by its cover”.

Among other disabled people awarded MBEs is Joyce Mouriki, chair and co-founder of Voices of eXperience, who is recognised for services to mental healthcare.

She is also vice-chair and co-founder of her local service-user and carer organisation, is employed in patient and public involvement with NHS Quality Improvement Scotland, and is a member of the Mental Health Tribunal for Scotland.

News provided by John Pring at www.disabilitynewsservice.com