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.
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.
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.”
“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”.
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