A newly-elected disabled MP has accused the Conservative government of introducing policies inspired by “eugenics” in the hope that disabled people will “suffer and die”.
Labour’s Jared O’Mara spoke out just weeks after beating former deputy prime minister Nick Clegg to win the Sheffield Hallam seat and become one of just a handful of disabled MPs in the House of Commons.
Speaking to Disability News Service (DNS) for the first time, O’Mara said he knew that his comments on eugenics* and the government would be controversial.
But he said he firmly believed that Tory ministers had “completely torn up the welfare system” which had previously supported disabled people, particularly through cuts and reforms to disability benefits, the decision to close the Independent Living Fund, and cuts to social care.
He said: “A lot of people say you can’t use that word, but I will do: it’s eugenics.
“They want disabled people to suffer and die. That’s literally what’s happening.
“Disabled people are out there suffering and dying because they have not got the financial means and financial support and nor have they got the legal means to lead an equal life, or even to lead a satisfactory life.”
Among the evidence he points to are reports of people with mental health conditions who have been asked by personal independence payment assessors why they have not taken their own lives.
He said: “How is that not eugenics? Putting thoughts of suicide into a disabled person’s head. It’s literally eugenics.
“I’m not going to shy away from it, people might say I am taking it too far, but as far as I am concerned, what I have seen and what has happened across the board, it’s been eugenics.”
He promised that he would be “taking no prisoners” as an MP, and would “call them out on this”.
He said: “There are people just like me and people who have got conditions that make things even worse for them than mine does, and they are dying and they are suffering.
“I am in it to shine a light where the mainstream [media] do not shine a light and where the Tories are turning their backs.”
He pointed also to Iain Duncan Smith, who in 2010, shortly after becoming work and pensions secretary, appeared to echo the phrase “arbeit macht frei” – which was written over the entrance gates of Auschwitz – by telling a BBC journalist: “Look, work actually helps free people**.”
O’Mara said: “He’s literally lifting, paraphrasing Nazi soundbites.”
He said he “absolutely” endorses efforts by user-led anti-cuts groups such as Black Triangle to secure a criminal prosecution of Duncan Smith and fellow former work and pensions minister Chris Grayling.
In December, Scottish criminal justice agencies rejected pleas to investigate the refusal of the two ministers to improve the safety of the government’s “fitness for work” test, despite evidence that that refusal caused the deaths of at least three benefit claimants with mental health conditions, and probably many more.
Police Scotland had been asked to investigate allegations of “wilful neglect of duty” by Duncan Smith and Grayling, after it was passed a dossier containing details of the deaths of three claimants with experience of mental distress by Black Triangle.
The three claimants took their own lives in 2011, 2013 and 2015 as a result of grave flaws in the work capability assessment (WCA).
These flaws mirrored those uncovered by a coroner in January 2010, following an earlier suicide, and passed to DWP just a few weeks before Duncan Smith and Grayling took up their new posts following the May 2010 general election.
Duncan Smith and Grayling failed to act on the coroner’s warning, which campaigners and families of some of those who died believe led to further deaths.
O’Mara said: “The legal system is ‘innocent until proven guilty’. We need to ascertain that with what Iain Duncan Smith and Chris Grayling did.
“If they’ve not done anything wrong then they can walk free. If they have done wrong then they can be punished.
“I believe there is a case to answer and they should go there. I support that campaign without reservation.”
Another issue he was keen to raise with DNS was the importance of ensuring that disabled people – and their families – are included in the decision-making process on new policies.
He said: “I don’t want any decisions to be taken about disabled people without disabled people being included in that decision-making process.
“Families need to be included in that process. They have a lot of experience and acumen in that field.”
Decisions, he said, should not be taken solely by politicians who “have never had to face these barriers and these problems”.
He added: “Anything that comes up to do with disabled people, disabled people should be at the epicentre of that decision-making process and that policy and legislative process.”
O’Mara has also spoken out this week on the access barriers he has already faced in his first weeks as an MP, and has told DNS that might have to be “in the vanguard for this” and “grin and bear the fact that it’s not perfect for me, and try and make it perfect for future disabled MPs” (see separate story).
He said: “I want to get more of us here. I’ve got to make it a better place for them.”
The first early day motion he signed as an MP was one calling on the government to reopen the Access to Elected Office Fund, which helped disabled people with the extra disability-related costs of seeking elected office, but has been closed since the 2015 election (see separate story).
But although he is keen to highlight disability issues as an MP, O’Mara insists that it will not be his only interest.
His previous career in promoting live music and working in the pub trade has given him an interest in “ensuring we have a vibrant night-time economy”, and in supporting arts and culture, and not just music.
He said: “I will support any cause I believe in, whether it’s to do with disability arts and culture or whatever. If it’s good for the country and I believe it’s moral, I will support it.”
And he said that he will ensure that he maintains a “healthy work-private life balance”, despite the pressures of his new life.
He said: “I have managed to go to the pub several times [since the election] and I will keep going to the pub.
“I’m really passionate about pubs and clubs and nightlife and I always will be.”
Despite having worked for nearly a year earlier in his career as a press, parliamentary and campaigns officer for the British Council of Disabled People, his views on another key rights issue could lead to disagreements with the disability movement.
O’Mara, who himself has cerebral palsy (cp), is a long-standing trustee of Paces, a specialist centre in Sheffield for children with cp which specialises in conductive education*** and also runs a special school, of which he is a governor.
And he told DNS that – although the UN disability convention demands an “inclusive education system at all levels” – he believes that mainstream schools are “horrible environments for disabled kids”.
He was educated in a mainstream school throughout his education, and he said: “All I had was misunderstandings and mistreatment and bullying about having a disability.
“So yes, in an ideal world, we would have all disabled kids in a mainstream school being educated alongside [non-disabled children], with their education tailored to suit them, but we don’t live in an ideal world and mainstream schools are horrible environments for disabled kids.”
He said that schools like Paces “provide a really good standard of education for kids with severe cerebral palsy, and often with learning difficulties”.
He said: “There’s a place for them and I’m passionate about it because they help kids get a better standard of education and a better life and alleviate the symptoms of cerebral palsy as well.”
He added: “I’ve known a lot of people that have been in mainstream schools and it’s always the same.
“I have never heard of anyone with a disability coming out of a school without being bullied, and I was bullied by one of my teachers for my disability as well.”
He said mainstream education would not be an “ideal and happy environment” for disabled children “until they get disability equality and disability awareness right in mainstream schools”, with disability rights a statutory part of the national curriculum.
O’Mara said he was aware that these comments were likely to prove controversial, but he said: “I can only talk from my own experience and from other people I have known.
“If there are disabled people who have been to mainstream schools and want to come out and say that all of the kids were so sensitive and understanding and knew everything [about disability], and all the teachers were great and they got all the adjustments they needed, then I would be happy to hear that, [but] I haven’t heard about it yet, I haven’t even heard one story.”
*The idea that society can be improved by selecting those who are allowed to survive and breed (definitions of eugenics vary)
**The words can be translated as “work makes free”, “work makes you free” or “work brings you freedom”. The writer and Holocaust survivor Primo Levi thought the Nazis meant these words ironically
***The disability charity Scope, an advocate of conductive education, describes it as a system of learning that “teaches those with movement difficulties to learn actively to achieve purposeful movement which can then be applied throughout daily life and learning”.
6 July 2017
A watchdog has been criticised for failing to investigate whether disability hate crime played a part in the harassment and abuse suffered by a disabled refugee, who was repeatedly failed by police officers over seven years before being brutally murdered.
Bijan Ebrahimi, who was Iranian, repeatedly complained to Avon and Somerset police about victimisation by neighbours in Bristol, but was seen by officers as “a liar, a nuisance and an attention seeker”.
He made 73 phone calls reporting crimes such as racial abuse, criminal damage and death threats – including an arson attack in 2007 – but police failed to record a crime on at least 40 of those occasions.
Despite individual examples of good practice, there was a “consistent, systematic failure” by call handlers to record the crimes against him properly, identify him as a victim of race hate crime, and to treat him as a repeat victim, according to this week’s long-awaited report by the Independent Police Complaints Commission (IPCC).
He again repeatedly asked police officers for help and protection in the three days leading up to his murder, early on 14 July 2013, following an unprovoked attack and further threats.
But instead of providing protection, police officers arrested him – twice – and then refused his further appeals for help, after he told them he was being threatened by some of his neighbours.
Shortly after his final phone call to police, Ebrahimi was beaten and kicked to death, and his body set alight, by 24-year-old Lee James, who lived just a few doors away in Capgrave Crescent, Brislington, on the edge of Bristol.
But although Ebrahimi had a physical impairment and a mental health condition, there was no discussion of the disability-related elements of what he experienced in the IPCC report.
The commission failed to discuss the impact of his impairment, even though one of the terms of reference for the inquiry was to examine whether incidents were “considered or identified as race hate crime or disability hate crime and was the immediate police response appropriate”.
In 339 pages, there are just nine mentions of the words “disabled” or “disability”, and four of those are from repeating the terms of reference, while there was no discussion of whether he had been a victim of disability hate crime.
The commission concluded that Avon and Somerset police failed Ebrahimi “on a number of levels, over a number of years”, and instead of being seen as a repeat victim of crime, his complaints about neighbours were “disbelieved” and he was “considered to be a liar, a nuisance and an attention seeker” and seen as the perpetrator rather than the victim.
It found that he had been “treated consistently differently [by police officers] from his neighbours, to his detriment and without reasonable explanation” and that “some of the evidence has the hallmarks of what could be construed as racial bias, conscious or unconscious”.
Despite the IPCC refusal to consider the disability-related aspects of his experience, the case bears significant similarities to other high-profile disability hate crime murders, including the use by the murderer of unfounded allegations that his disabled victim was a paedophile to justify the attack.
Katharine Quarmby, a coordinator of the Disability Hate Crime Network and the author of Scapegoat, a pioneering investigation into disability hate crime, said the IPCC failure was “very disappointing”.
She said: “He was different in three ways: race, religion and disability, and to not understand how complex that is just seems so disappointing.
“I just wonder whether they understand disability. I wonder whether they have a clue.
“People sweep it under the carpet because they don’t understand it.”
She said research showed that the more minority groups a disabled person is a part of, the more likely they are to be violently attacked.
And she said that Ebrahimi’s murder was part of the “grim pattern” of the false use of the “paedophile” label that is connected with many disability hate crimes, and is still not acknowledged by the authorities.
Asked why there was no discussion in its reports of disability hate crime, an IPCC spokeswoman said: “It became apparent in the early stages of the investigation that there was no evidence of disability hate crime, but there was substantial evidence that Mr Ebrahimi self-identified as a victim of race hate crime.
“Investigators were consequently led by this evidence and race hate crime became the prevalent line of enquiry.”
She added: “Our investigations are led by the evidence gathered. We found no evidence of disability being a factor in how Mr Ebrahimi was treated by the police.”
But Quarmby said: “’Whilst the IPCC is to be applauded for its forensic examination of race as a motivating factor both for the attacks on Mr Ebrahimi and the lack of police action thereafter, it shows little understanding of the motivators around disability.
“If disability as a factor has not been investigated by police, scrutinised by the CPS or then examined as a possible factor by the IPCC, it is not surprising that there is no evidence.
“There rarely is evidence of a crime if you do not look for it.”
James pleaded guilty to murdering Ebrahimi and was sentenced to life in prison, but was given a minimum sentence of just 18 years. Steven Norley, his accomplice, was jailed for four years after pleading guilty to assisting an offender.
In late 2013, the attorney general dismissed calls from the Disability Hate Crime Network to ask the courts to increase the sentence handed to James, on the grounds that it was a disability hate crime.
Soon afterwards, the network raised concerns that IPCC appeared to be ignoring the disability-related elements of the events that led to Ebrahimi’s murder, despite clear parallels with other notorious disability hate crimes.
In December 2015, a police constable and police community support officer were convicted of misconduct in public office and two other officers were acquitted. All four were later dismissed for gross misconduct, while four others received written warnings.
Chief constable Andy Marsh, of Avon and Somerset police, said the force had failed Ebrahimi “in his hour of need and I am unreservedly sorry for the pain his family have suffered in the last four years”.
He said the force had “made many changes since Mr Ebrahimi’s murder in response to the things we learnt and identified to be in need of change.
“Taken together these changes have transformed the way we operate, and we will do all in our power to prevent a repeat of the circumstances surrounding Mr Ebrahimi’s death.
“Spotting vulnerability early, understanding and embracing difference and closer joint working with our partners to achieve shared solutions to complex problems are at the heart of these changes.”
In a statement, Bijan Ebrahimi’s family said: “The IPCC’s report speaks to the institutional racism that lies at the heart of Bijan’s murder and immolation.
“Had the authorities not colluded in the race hate crime that Bijan suffered in his council flat over all those years, he would be alive today.
“Avon and Somerset Constabulary has taken responsibility for its racial discrimination against Bijan and for failing to protect his life.
“Bristol City Council must now do the same if justice is to be done.”
A multi-agency review, commissioned by the Safer Bristol Partnership – which includes the police force and the city council – is likely to be published within the next few weeks.
6 July 2017
The parliamentary authorities should do far more to make the House of Commons accessible, according to a disabled MP who has faced a series of major barriers in his first weeks since being elected.
Jared O’Mara, who has cerebral palsy, has had to rely on support from other Sheffield MPs to secure some of the adjustments he needs to do his job.
But nearly a month into his new role, he is still having to miss some debates in the House of Commons chamber because he cannot stand for longer than five or 10 minutes and there have been no seats free.
He told Disability News Service (DNS): “There has been a couple of times where I have not been able to get a seat and so I have not been able to attend.
“The thing is with the Commons chamber, it is 650 MPs but there’s not 650 seats, so for busy events… there’s not enough seats for everybody. It’s ridiculous in this day and age.”
He is full of praise for the speaker, John Bercow, who has given him permission to wear a tee shirt, and no tie, because he cannot do up buttons.
That decision came as the speaker made a separate decision to allow all male MPs to remove their ties in the Commons chamber, a ruling which led transport minister John Hayes to warn that he would refuse to take interventions when speaking from any male MPs who were not wearing ties.
A spokesman for Hayes assured DNS yesterday (Wednesday) that this warning did not apply to O’Mara.
Labour’s whips have allocated O’Mara an office in the House of Commons, when most new MPs are given space in nearby Portcullis House.
This is because – if he was in Portcullis House – he would not be able to reach the Commons division lobbies within the necessary eight minutes when a vote is called.
But because the front door requires the use of two hands to unlock it, he is having to use the back door to enter his new office, at least until the Commons authorities change the lock to one that is more accessible.
Another access issue – and one for which he has not been granted an adjustment – has arisen around his need to stay in an accessible hotel.
Because the hotel allowance for MPs is only £150 a night – set by the Independent Parliamentary Standards Authority (IPSA) – he has not been able to find an accessible hotel closer than Hammersmith, in west London, which means an hour-long journey to parliament every morning.
He is not likely to find permanent accommodation in London until the summer recess.
An IPSA spokesman said he could not “discuss an individual’s circumstances” but that the costs for “disability assistance” that can be claimed by disabled MPs can include “any necessary [additional] costs relating to accommodation”.
O’Mara is clearly annoyed that he is still facing obstacles that are making it harder for him to do his job than non-disabled MPs, weeks after he secured his election victory.
And he is mystified about why there is no form which new disabled MPs can fill in to tell the Commons authorities about any adjustments they might need, which he says could easily be included in the information pack they are handed immediately after their election victory.
He also points to the Equality Act, which says parliament has an “anticipatory” duty as a public organisation to think in advance about the adjustments it should make for disabled people, such as improving the signs and information around the Houses of Parliament.
He said: “They should really have clear, proper signage, of where everything is and what all the rooms are and the purposes, and they don’t.
“The amount of times I keep walking past the lift to get up to my office because there isn’t a sign saying ‘lifts’. That’s something they need to really think about.”
He said: “I have had to pursue these adjustments with the help of colleagues, some of the other Sheffield MPs, and with the help of the whips office, and I am finding there are more coming up.
“All of this should have been in place. I shouldn’t have had my friends and the whips office chasing all this for me. It should all have been in place for day one. That’s the law.
“Maybe I have to be in the vanguard for this and I have got to grin and bear the fact that it’s not perfect for me, and try and make it perfect for future disabled MPs.
“I want to get more of us here. I’ve got to make it a better place for them.”
But he says his experience would have been “a lot worse” if he had not been able to rely on advice from Lord [David] Blunkett, another disabled politician who represented Sheffield as an MP.
He said: “He’s a lovely, lovely man. Some of the stuff he went through [as an MP]… He’s a fighter as well, like I am.
“My ambition during my time here is to make it perfect for future disabled MPs, where it’s proper equal from the day they land here.”
A House of Commons spokesman said he could not comment on the dress code arrangements because “we cannot comment on the contents of private conversations”.
He has so far refused to comment on the issue of seating in the Commons chamber, the lack of signage across the parliamentary estate, the access problems with O’Mara’s office front door, and the lack of a form for new MPs to request reasonable adjustments before they attend parliament for the first time.
But he said that step-free routes and accessible toilets and lifts in the Palace of Westminster and Portcullis House are marked on maps in a handbook given to MPs, while “the Parliamentary Health and Wellbeing Service can also advise on accessibility issues”.
He said: “The House of Commons aims to provide a positive, inclusive working environment where people are valued for the skills and experience they bring to work, whilst being representative of the society they serve.
“This means making parliament more accessible, diverse and free from discrimination and meeting the requirements of the Equality Act 2010.
“We are committed to this target and have implemented a number of initiatives to ensure we are compliant with the terms of the act.”
6 July 2017
The two newest disabled MPs in the House of Commons have backed a call for the government to reopen a fund that helped politicians meet the disability-related costs they face when campaigning for election.
For both de Cordova and O’Mara, the EDM was the first one they signed after becoming MPs.
Another disabled MP, the Liberal Democrat Stephen Lloyd, who was re-elected after losing his seat in 2015, has also signed the EDM, which was drawn up by the Green party co-leader and MP Caroline Lucas.
The fund, which provided grants of up to £40,000 for disability-related costs for disabled people standing for the UK parliament and in other English elections, has been closed since the 2015 general election, supposedly while the government evaluates its success.
The EDM notes that disabled people are under-represented in the House of Commons, despite the election of O’Mara, de Cordova and Lloyd, and calls for more to be done to “encourage a diverse mix of local, regional and national election candidates that better reflects the society we live in”.
There are currently only about six MPs who self-identify as disabled people, including the Tory MPs Robert Halfon and Paul Maynard, and Labour’s shadow minister for disabled people, Marie Rimmer, although others have spoken of having long-term health conditions, such as the prime minister, Theresa May, and Labour’s shadow home secretary, Diane Abbott, who both have diabetes.
O’Mara, who has cerebral palsy, had to fund his own taxi fares during his general election campaign – which cost him a couple of hundred pounds – and pay for another £1,000 in taxi fares during his much longer election campaign for a seat on Sheffield City Council last year.
He said he had signed the EDM “without hesitation”, and that reopening the fund was “not much to ask”, particularly when many other candidates have more complex needs than he does.
He said: “There’s not a flood of disabled candidates for councils and parliamentary elections. It’s a minuscule expense.
“We need to be moving to a lot more disabled people in parliament, in council chambers, in the interests of representative democracy and diversity and equality.”
He added: “The costs arising from having any impairment should be no barrier to taking part in democracy and restoration of this fund is very much inexpensive and of utmost importance to our shared goal of true equality in the United Kingdom.”
He said he was “very keen” to campaign for greater diversity of MPs, and not just for more disabled MPs and councillors, but “all under-represented cross-sections”, such as transgender people, younger people, Roma, Sikhs and Poles, so there is a “truly representative democracy”.
Lucas said: “Though the representation of disabled people in Parliament is improving, there’s still a huge amount of work to do.
“The government’s prevarication on this issue is bewildering.
“We should be doing all we can to help people with disabilities stand for office, but instead ministers have refused to reinstate this scheme.
“Our democracy is enhanced when MPs reflect the communities they represent and we should be doing all we can to increase the number of disabled MPs to reflect the levels of disability in Britain.”
Deborah King, co-founder of Disability Politics UK, welcomed the EDM.
She said: “The Access to Elected Office Fund needs to be brought back now.
“Disabled people are not heard enough in the corridors of power. The Commons is not representative of the UK population. It will make better quality decisions when it is.”
Two years ago, the Equality and Human Rights Commission (EHRC), in its submission to a UN inquiry into the rights of disabled people to participate in political and public life, called for the fund to be reopened.
And some of the disabled candidates standing in last month’s general election described how the government’s failure to reopen the fund had damaged their chances of election.
Meanwhile, a Scottish version, the Access to Elected Office Fund (Scotland), which is run by Inclusion Scotland and funded by the Scottish government, has been providing financial support for disabled candidates for Scottish local and devolved elections.
It provided support for a total of 44 potential candidates in this year’s Scottish local elections, with 39 of them going on to be selected as candidates and 15 being successfully elected.
The Government Equalities Office, which was responsible for the AEOF, has refused to comment.
6 July 2017
The concept of personal assistance has been severely damaged by years of austerity and policies that have “degraded” the support mechanisms designed to enable independent living, leading figures in the disability movement have warned.
They were speaking at the launch of Personal Assistance Relationships, a research study which highlights how employing personal assistants can be empowering and liberating for disabled people, but also discusses the “complex” and “variable” nature of such relationships.
The disabled academic Professor Tom Shakespeare, who led the research – alongside Dr Andrea Stockl and Dr Tom Porter* – told the launch of the University of East Anglia study that “personal assistance works”, and that it provides disabled people with freedom and control.
He said it was “one of the revolutionary innovations of the disabled people’s movement”, alongside the concept of independent living.
And he said the government needed to see that it was “cheaper to support people in the community than to have them in residential institutions”.
Baroness [Jane] Campbell, one of the pioneers of the independent living movement, a co-founder of the National Centre for Independent Living (NCIL), and now a crossbench peer, said the state of independent living and personal assistance was currently “very fragile”.
She said the last few years had seen a “crash” in the development of personal assistance, with the closure of the Independent Living Fund, cuts to the funding of centres for independent living (CILs) and political ideology that had “combined together to severely damage the whole concept of personal assistance and independent living, with support budgets being cut to the quick”.
She told the event that she was “very proud” to have been involved in the “heyday” of the “PA revolution”.
The origins of this revolution, she said, had been in the late 1970s and early 1980s when five disabled people “broke out of a residential home” by persuading the local council to “use the money used to warehouse them” to employ their own support workers in the community.
She later helped set up NCIL, which assisted CILs across the country to develop peer support, information, advocacy and training for PA-users.
She said that working at NCIL – where she was co-director – was “probably the best job I ever had.
“To see people grow in themselves and develop all these unique relationships was actually quite a wonder to be part of.”
But she contrasted that with the current situation facing disabled people.
She said: “I have seen disabled people who are desperately struggling to exercise choice and control because they are forced to offer [PAs] lower wages, fewer hours.
“For the first time since the gang of [five] broke out of residential care, disabled people face the horrific possibility of returning to warehousing.”
She added: “We are becoming judged solely on short-term economics rather than being measured against article 19 [on independent living] of the UN Convention on the Rights of Persons with Disabilities.”
Mark Harrison, chief executive of the Norfolk-based disabled people’s organisation Equal Lives – which was a partner in the research – said the infrastructure of support around personalisation and independent living had been “degraded” over the last decade.
He said that local authorities – and Equal Lives – had lost about two-fifths of their funding, while disabled people “have had their personal budgets slashed and in many cases their eligibility removed”.
He said that using PAs and giving people choice and control produces better outcomes and is more cost-effective than care provided by agencies or the private sector or managed by local authorities.
He said: “I would think in a time of austerity it would make sense to expand [but] in Norfolk and Suffolk it is going the other way, actually the numbers are going down.
“All that independence, all that personalisation, has gone. The cuts are driving everything and it is degrading the whole system.
“It seems to me we are going backwards, [and in Norfolk] everything is about meeting savings targets.”
He added: “How can we get back that vibrancy that Jane talked about, that social change element, that liberating element?
“At the moment, everything seems to be going to the lowest common denominator and care agencies are clearing up.”
Kevin Caulfield, of Hammersmith and Fulham Coalition Against Cuts, said that the “fallout” from increased charging for support and the closure of the Independent Living Fund meant that “lots and lots of disabled people who had access to good personal assistance and independent arrangements, those have been destroyed”.
But in his borough, the Labour-run council had abolished charging, ringfenced the funding people had previously received from ILF, and set up an independent review of the decision by a previous administration to scrap a direct payments support service.
He said: “We are really trying to buck the trend in Hammersmith and Fulham, saying it doesn’t have to be like this.”
Tracey Lazard, chief executive of Inclusion London, said that social care was now a “hot political issue”.
She said: “We have to grab that and make the most of it.”
But she warned: “At the moment, disabled people are not even being talked about in social care. It’s older people.”
She said there was “potentially a change coming”, because of greater public and political discussion of austerity, which could be “a moment for us to start pushing back” against cuts to social care.
Shakespeare said that personal assistance “has to be part of government thinking”, as it prepares to publish a green paper on adult social care.
He said: “It’s a proven model. We know it works [but] we need to make it work better.
“I would hope any government would see that it is cheaper to support people in the community than to have them in residential institutions.
“Living independently in the community is what we all deserve.”
Tracey Jannaway, director of the PA services social enterprise Independent Living Alternatives – another partner in the research – said there was still “a lack of understanding of what personal assistance is, the difference between having a PA and having a care worker”, while many still thought: “What does it matter?”
She said there needed to be efforts to “change that mentality… away from the concept of care and towards personal assistance.
“There will always be [disabled people] who want [traditional social care] but for people who want personal assistance, it still needs to be pushed and explained to people again and again and again.”
*He can be contacted by email at T.Porter@uea.ac.uk
6 July 2017
Enabling disabled people with support needs to employ personal assistants (PAs) – rather than relying on traditional care workers – can be empowering and liberating, but relationships with PAs “can sometimes go wrong”, according to new research.
The Personal Assistance Relationships study, led by the disabled academic Professor Tom Shakespeare, highlights the “complex” and “variable” nature of personal assistance relationships, and warns that they involve “a dynamic interplay of emotions, ethics and power”.
He told an event in London, held to launch the University of East Anglia research, that “personal assistance works” and that it provides disabled people with freedom and control.
But he added: “It is not straightforward, particularly for people who don’t come from the tradition of the disabled people’s movement.”
He told the launch event that personal assistance was “one of the revolutionary innovations of the disabled people’s movement”, alongside the concept of independent living.
As part of the study, the researchers interviewed 27 disabled employers of PAs, and three parents of PA employers, as well as 28 PAs.
In England, an estimated 65,000 disabled people employ 145,000 PAs.
The aim of the research – also carried out by Dr Andrea Stockl and Dr Tom Porter* – was to highlight “what makes a good PA relationship and how it can go wrong”.
Many disabled employers they spoke to said that the relationship with the PA could not be too formal.
One said: “They’re doing quite personal things like showering you.
“They’ve got to be people you trust intimately and people that you know, very, very well, and because of that you’ve got that relationship going… I don’t differentiate between the friendship side of it and the work side of it. The two go together as far as I’m concerned.”
Another employer of PAs said that the need to disclose personal information to their PAs meant it was unrealistic to expect a distinction between “personal” and “professional”.
She said: “People know things about me that they wouldn’t know in any other circumstances.”
One PA said: “It’s not as if you are relating to your colleague at work or your boss at work, you are part of their daily routine and you get to know their most personal needs… you are in the person’s house and into their lives completely.”
But nearly all the employers and PAs who spoke to the researchers said they had encountered problems because of the informal nature of their relationships.
One PA said: “I was her sole employee, and everything rested on me and that wasn’t a good feeling.
“I just got way too involved with her. I feel like I would do things differently now.”
Many of those interviewed spoke of how there had been at least some conflict in their relationships.
One employer told the researchers about a PA who had struggled to make the transition from working in residential care to becoming a PA.
She said: “She was quite challenging to work with. She got very upset because in her experience working in a care home she was used to having bleach and certain materials locked away in a cupboard, and of course this being a private house I just had my bleach under the sink…
“Her whole attitude was very much that she knew what she was doing and I didn’t know what I was doing.”
The study calls for both disabled employers of PAs and their personal assistants to be given the “skills and knowledge” they need to make their relationships work.
Relationships with PAs are inevitably “emotionally complex”, the study concludes, and adds: “Emotions arise because the connections between the disabled person and his or her personal assistant(s) are often long-term, intimate working relationships.”
Shakespeare, Porter and Stockl say that this needs to be recognised by both employers and PAs.
It is also crucial to set boundaries, making it clear how the relationship between PA and employer will work in practice, as PAs may not want to share their private life, while the workplace is also the PA employer’s home.
And they say that conflict within personal assistance relationships is common. It is vital, they say, for both employers and PAs to be given “the skills and knowledge they need to manage these relationships effectively”.
They make a number of recommendations for disabled people employing PAs, for PAs themselves, and for policy-makers and public bodies.
Among those recommendations is a call for greater efforts to bring people into the PA workforce, as a lack of choice for disabled people can force them to employ unsuitable PAs.
They also call for funding for training for both PAs and their employers, which could include training PAs in the social model of disability, and peer support – again, for both PAs and employers – to help with the potential isolation caused by personal assistance, and for both employers and PAs to have access to independent legal advice.
*He can be contacted by email at T.Porter@uea.ac.uk
6 July 2017
More than half of those disabled people previously eligible for the Motability vehicle scheme have lost that eligibility after being reassessed for the government’s new disability benefit, according to a freedom of information response.
The Department for Work and Pensions (DWP) figures show fewer than half (about 126,000) of the 254,000 people previously receiving the higher rate mobility component of disability living allowance (DLA) secured the same level of mobility support when reassessed for personal independence payment (PIP).
Of those reassessed between October 2013 and October 2016, about 65,000 had their entitlement reduced to the standard PIP mobility rate, and about 63,000 lost their entitlement to mobility support altogether.
Only those entitled to the enhanced rate of the PIP mobility component are entitled to join – or to continue to be a member of – the Motability scheme.
Although they were first published by DWP last December as part of a wider release of statistics, this appears to be the first time that they have been highlighted publicly.
DR UK pointed out that those who saw their mobility support fall from the higher to the standard rate after reassessment have lost £36 a week, while those who lost all mobility support have lost £58 per week.
DR UK said the “removal of Motability cars from disabled people who rely on them has devastated their independence, in many cases removed their ability to work and meant they are effectively housebound”.
Two months ago, figures highlighted by the disability charity Muscular Dystrophy UK showed that about 900 customers were having to return their Motability vehicles every week as a result of the PIP assessment process.
Ken Butler, DR UK’s welfare rights adviser, said: “The recent rule change that allows people to keep their Motability car whilst they appeal a PIP decision will help, but on its own is simply not the answer.
“The rule that confines higher mobility awards only to those who can walk up to 20 metres must be scrapped. It makes no sense and was only ever a cost-cutting measure.
“Instead, those awards must again include those disabled people who can only walk up to 50 metres, who are likely to have the same extra costs.
“DR UK has lobbied for this since before PIP was introduced in 2013. It is a universal call made by all other disabled people’s organisations and disability charities.
“Otherwise we will see many thousands of disabled people forced to stay at home with no prospect of employment or contributing to their community.”
6 July 2017
The authors of a major new study have called on the government to launch an inquiry into whether disability benefit payments should be increased, after finding more than half of the people who use foodbanks are disabled and unable to work.
The report, which looks in detail at the profiles of people receiving emergency food assistance, found the proportion of disabled people using foodbanks was three times higher than the national proportion of disabled people among low-income households.
The study says that foodbank-users are mostly from groups heavily affected by the government’s welfare reforms: disabled people, lone parents, and large families.
It says the study’s results may suggest that “current welfare support for disabled people is insufficient to ensure that such individuals are not left destitute”, and that they are particularly at risk of “deep poverty and severe food insecurity”.
And it warns that further cuts to the real terms value of benefits – a freeze on many benefits is set to last until 2020 – “will only serve to exacerbate the problem of food insecurity”.
The report, Financial Insecurity, Food Insecurity, And Disability, was carried out by the anti-poverty charity The Trussell Trust and academics from the universities of Oxford and King’s College London, and is the biggest nationwide study of foodbank use yet to be carried out.
It found that more than two in five foodbank-users were claiming employment and support allowance (ESA) – the out-of-work sickness and disability benefit – and most were in the ESA work-related activity group (WRAG), for those sick and disabled people found able to take steps towards employment.
Almost three times more WRAG claimants use foodbanks than the proportion in the general population.
But the proportion of those in the ESA support group using foodbanks was lower than in the general population.
The study also says that claimants subject to benefit sanctions – such as those in the WRAG or claiming jobseeker’s allowance – are more likely to use foodbanks.
The authors say that the high proportion of WRAG claimants using foodbanks was “particularly a cause for concern” because the research was carried out before the government implemented its latest cut to disability benefits, when it reduced weekly payments to new claimants in the WRAG by nearly £30 a week, in April this year.
They add: “This may result in even more ESA claimants having to use food banks.”
The authors conclude that benefits are now too low to ensure that many claimants can afford their basic needs, particularly disabled people.
The Trussell Trust called for a review of the financial support provided for those in the WRAG, and for a renewed commitment to efforts to support disabled people into work.
The authors also found that nearly two in five people using foodbanks were waiting for a benefit payment, with most waiting between two and six weeks, although a fifth had been waiting seven weeks or more.
A third of these delays were for people waiting for ESA payments, usually – again – those in the WRAG.
The study involved more than 400 households that had been referred to 18 foodbanks across England, Scotland and Wales.
In all, more than one in five of all respondents said they had slept rough in the past 12 months or were currently doing so, while more than half had gone without heating for more than four days in a month, had been unable to afford essential toiletries, and/or had been unable to afford appropriate clothes for the weather.
The authors conclude: “The severity of poverty observed and what it means for people’s ability to acquire sufficient and adequate food is a serious public health concern.”
Philip Connolly, policy manager for Disability Rights UK, said: “More than half of food bank users are disabled people or those with a long-term health condition.
“The initiative by Trussell Trust shows that society is reaching out to them, but they must wonder why there is a government denying them adequate social protection.”
The Trussell Trust runs a network of over 428 food banks which provide three days’ nutritionally-balanced food and support to people in crisis, all of whom will have been referred by a professional such as a social worker, health visitor or school liaison officer.
6 July 2017
A woman whose daughter was thrown out of a pub because she was disabled is hoping an awareness-raising “disability pride” event in the same city this weekend will highlight the discrimination faced by people with invisible impairments.
Jenny Skelton, who is disabled herself, has been planning Disability Pride Brighton since the incident with Charlie – one of her three adopted, disabled daughters – took place at a bar in Brighton last August.
Charlie had crouched to the floor with her hands over her ears after being startled by some sudden loud music, but a member of staff asked her to leave, despite being told by her mother that the actions were a result of her impairment and that kicking her out was a breach of the Equality Act.
Skelton said the company that runs the bar, Laine Pub Company (LPC), was so “horrified” at the way she was treated by its member of staff – who left his job as a result of the incident – that it contributed £1,500 towards the costs of Disability Pride Brighton, which has also received £10,000 lottery funding.
LPC has also ensured every member of staff across the company has received fresh disability equality training.
Skelton said she was hearing frequently of cases in which people with invisible impairments face discrimination because they are “a bit different” but do not “look disabled”, such as people with ME – including the organising committee’s treasurer – being asked why they are using seats reserved for disabled people.
She said: “Brighton is one of the most inclusive places you can be, but nevertheless these kinds of things do still happen.”
Skelton said she hoped the awareness-raising event would be a “celebration” rather than focusing on what happened to her adopted daughter last year.
She said: “It was a very traumatic incident for Charlie, but it was just one person who got it wrong.
“We really want people to recognise that disabled people have a life and can enjoy themselves and have a right to be here, and should have the respect that they deserve.”
Disability Pride Brighton takes place on Sunday (9 July) in New Road, Brighton, from 2-7pm.
The free event is being organised by a committee of disabled people, chaired by Skelton, with entertainment provided by disabled performers including the bands Paper Dragon, The Autistix and Zombie Crash, and singer-songwriter Daniel Wakeford, best-known for appearing on the Channel 4 show The Undateables.
There will also be dancing, information stalls and a picnic area accessible to families with disabled children, while Charlie will be on stage as her mother opens the event.
The mayors of New York and Palermo in Italy will send video messages of support, as their cities are hosting their own Disability Pride festivals on the same day.
Skelton plans to repeat the event next year, and hopes it will eventually spread to other cities around the UK.
She said: “I think this should happen in every city, every year. That would be my hope.”
The event is taking place as a new report by the European Network on Independent Living (ENIL) stresses the importance of organising awareness-raising events as part of measures to support disabled people’s independent living and inclusion.
The report says that such events can “combat stereotypes, prejudices and harmful practices”, “foster respect for the rights and dignity” of disabled people, and promote awareness of their “capabilities and contributions”.
It adds: “In all parts of the world, negative attitudes, stereotypes and stigma are a serious hindrance to the development and implementation of inclusive policies, even when there is political will for reforms.”
The ENIL report looks at the main barriers to realising disabled people’s right to live independently and be included in the community, as set out in article 19 of the UN Convention on the Rights of Persons with Disabilities.
These barriers include negative attitudes and stigma; the existence of institutional services; a lack of support for families; barriers to mainstream services and facilities; the lack of good quality, affordable and accessible support services in the community; and the misunderstanding and misuse of key terms such as “independent living” and “personal assistance”.
The report also stresses how barriers to other convention rights – such as the rights to non-discrimination, accessibility, access to justice and personal mobility – can also impact on independent living.
6 July 2017
News provided by John Pring at www.disabilitynewsservice.com