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    Disabled people should not be divided into the ‘cans’ and ‘cannots’. Choice and control are not all-or-nothing characteristics, but can be nurtured through the (extra)ordinary skills of those who take up roles as personal assistants or support workers. By looking at how these relationships play out in real life, people with intellectual disabilities themselves can help us learn more about how to manage practices in respectful ways – and to avoid practices which become neglectful or abusive.

    Inclusive research, where people take active roles within a project, is in itself a way of achieving ‘choice and control’. And just like with direct payments or personal budgets, inclusive research works best when there is good support from other people who will listen to you, and help you decide things for yourself. In light of the frequent scandals in English social and health care, it may seem more important to protect and safeguard people with intellectual disabilities, rather than to understand their rights to decision-making. However, we need to pay detailed attention to their everyday lives. Otherwise, we are at risk of assigning them to a special sub-category of disabled people whose life chances depend on consumerist models of care.

    This theme about making decisions with others is reflected in a recently published study about the process of support planning, in which we tried to unravel the blanket of assumptions which sometimes prevent people with intellectual disabilities from enjoying their rights to ‘choice and control’. With the implementation of the new Care Act the principle of ‘wellbeing’ lies at the heart of both assessments and support planning. Yet a personal budget user tends to be treated in practice either as someone who ‘can’ do it for themselves, or as someone whose family and carers will protect them from making the wrong decision.

    Our research about support planning asked people with intellectual disabilities themselves about their experiences with personal budgets. Their words led us to believe that people can grow more confident in managing their relationships with others, and that increased self-confidence will mean a better chance of being in control of their lives. Three important areas of focus stood out:

    • Identity matters: People in this study demonstrated in their interviews how they relied on praise and encouragement, and when this was not forthcoming, they became anxious or unsure of themselves.
    • People in your life: One woman in our study said: ‘I’ve got control. You know, me and [my personal assistant] can sort of sit down and we’ll work out dates and that.’ However, there was a tendency to see oneself as always at fault, as morally unworthy, and certainly as a constant learner. The phenomenon of ‘control’ was not seen as an individual accomplishment, but as something that was enacted together with others, and some spoke of the professional staff who supported them by first name, and considered them to be potential friends and people to trust with problems.
    • Personal budget processes: When it came to the actual processes involved in a personal budget, our participants showed considerable confusion. They generally liked the idea of ‘meetings’, but relied on others telling them what would happen in those meetings which seemed a little like oral One man whose review meeting was coming up said: ‘I’ll just listen to what they say. Just wait and see…I don’t know until I get there’. Despite all this, several people spoke about the value of trust in relationships they enjoyed with friends and peers in self-advocacy groups, with their personal assistants, and other practitioners. They all wanted an approach which was truly personalised, and they cared about the small details in their day-to-day living and in taking action to give something back to the community.

    What does all this mean then for policy? One of the key points is that functional ability and skills should not be confused with the right to choose, with ‘autonomy’. People should not have to prove their abilities in independence skills, before having the right to live the life they want. This shift towards a personalised focus on the identity of an individual is the meat of person-centred planning.

    Equally, with the trust placed in one’s own supporters, the skills of a personal assistant to step back andfacilitate choice are very much at the heart of a successful personal budget. More attention to the detail of personal assistant practices and relationships will help us to see how they can get stuck, how support practices can move from being mutually supportive towards becoming defensive, judgemental and even abusive.

    Conversely, of course, we can also look at these relationships to see how positive facilitation and support takes place. This is what our new research is doing, with a focus on understanding social practices in ways that help us to make changes, on the terms of people with intellectual disabilities themselves. ‘Getting Things Changed’ is planned and carried out in co-production with disabled people, and one of the strands of this project is working with a local drama group, The Misfits, to help us understand the way in which young people with intellectual disabilities learn those ways of being more confident in themselves, in interaction with a personal assistant.

    First published on the British Politics and Policy blog

    Tagged , , | Comments Off on Social care must not disable people with intellectual disabilities

    On Friday, campaigners from Disabled People Against Cuts, Mental Health Resistance Network and Boycott Workfare staged a stormy protest outside City Road Medical Centre in Islington, against the introduction of ‘job coaches’ into GP practices, under the rubric of ‘integration’ and ‘joined up care’.

    In fact, the arrival of job coaches in Islington GP surgeries exposes the toxic reality of government plans to merge health and employment services. In a move that is both unethical and unsafe, health professionals are being tasked to deliver benefit cuts for the Department for Work & Pensions (DWP). This involves  a raft of measures to support the imposition of ‘work cures’, including setting ’employment’ as a clinical outcome and allowing employment coaches to directly update a patient’s medical record.

    Islington GP Pilot

    NHS Islington Clinical Commissioning Group (CCG), who oversee local health care, has accepted DWP funding to ‘drive employment outcomes through strategic health commissioning’, in a move intended to enforce the mantra that ‘work is good for you’, whether it is or not.

    Jobs on prescription‘ targets people with long term mental health conditions and is being piloted in seven Islington GP practices, as part of a £90K collaboration between the council, the Jobcentre, DWP, and Islington CCG. In other words, a partnership between healthcare and the government departments responsible for administering benefits, including the punitive and unaccountable sanctions regime – a system which is known to disproportionately affect people with mental health conditions, as well as disabled people and those with long term health conditions’ please.

    Destroying patient trust

    The first casualty of government efforts to interfere with clinical judgment is trust. The scheme will undermine trust between doctors and patients and could discourage disabled people and people claiming benefits from using healthcare at all, if doing so is seen to be linked to pressure to find paid work or loss of benefits. An activist from Disabled People Against Cuts warns that

    many disabled people already feel they have to watch every word they say when seeing their GP, in case it is used against them at some point to stop their benefits. Placing Jobcentre-funded staff in doctors’ surgeries could destroy the doctor/patient relationship and may lead to some people not accessing vital healthcare when they need it most. Many will feel that the GP surgery is not a safe space to discuss their health concerns if a GP can prescribe job coaching. This pilot will pile pressure on patients in mental distress who are already suffering.”

    Discredited private contractor Maximus

    Employment coaches for the pilot are provided by Remploy (the recently privatised employment service for disabled people). Remploy is owned by Maximus, the private company contracted to carry out Work Capability Assessments (taking over from ATOS). Work Capability Assessments have been independently associated with an increase in suicides, self-reported mental health problems and antidepressant prescribing, and found by a judicial review to ‘disadvantage people with mental health problems, learning disabilities and autism’.

    Evidence that Maximus falsified the results of ‘fit for work’ tests has been raised in parliament and their conduct in both the US and UK has been very widely criticised by claimant and disability rights groups.

    Maximus was also recently accused of trying to bribe doctors away from the NHS with salaries well above average rates to carry out ‘fit for work’ assessments. It is difficult to imagine any organisation less suited to working in partnership with primary care or with a worse record in relation to mental health and disabled people.

    JobcentrePlus Invasion

    The Health and Work Programme for Islington explicitly aims to integrate employment support in the ‘map of medicine’ that doctors are pushed to use to inform their decisions. The programme fully intends to get people into work, whatever their circumstances, and – through the new, improved ‘fit note‘ and ‘fit for work’ programme (also delivered by Maximus) – to keep them working, whether they are sick or not.

    In a move that will worry many GPs, Islington Health and Wellbeing board intend to make “employment status” part of the Patient Held Record. Every health care professional will soon be obliged to prescribe the work cure, whether or not they (or the patient) believe this is in the patient’s best interests. This is the real meaning of the board’s stated intention to “embed employment into the ‘wiring’ of the healthcare system”.

    The Islington pilot is part of DWP efforts to place Jobcentre advisors in libraries, in schools, and even in foodbanks – whose use has skyrocketed in the last six years. The presence of the Jobcentre turns these into places where people are coerced into work, no matter how ill-paid, precarious, or unsuited to their skills and other responsibilities. DPAC and the Mental Health Resistance Network said:

    “At a time when some claimants have been driven to suicide by the constant bullying, assessments, threats and sanctions that now form part of the UK’s benefits system, there must be no place in the NHS for Jobcentre busy-bodies. Disabled people, benefit claimants and supporters can and will defeat this appalling attack on the fundamental principle that healthcare professionals should ‘first do no harm’.”

    These takeover plans do not end with health. The DWP aspires to ‘join up’ all public services to ‘get local people back to work’, including transport and housing. These developments also support the extension of benefit conditionality – the hoops you have to jump through to be eligible for benefits – to a much wider range of people and a much wider range of circumstances.

    Mandatory referral

    To date there has been no consultation with patient or claimant groups. It is unclear whether there are safeguards in place e.g. to ensure patients are told that choosing not to see the job coach will have no impact on either their health care or their benefits. A promise from Richard Watts, leader of Islington council, that the scheme is entirely voluntary is not reassuring, given that the whole idea behind the scheme is to ‘promote the idea of employment for people with health conditions’. Both service users and health professionals have every reason to suspect that patients will feel under pressure to agree to see a job coach and that over time the scheme will become mandatory.

    A spokesperson from MHRN said:

    “our concern is that this scheme will not be voluntary. Over time it will become mandatory and lead to sanctions and loss of benefits, as the doctor becomes part of the DWP scheme to force claimants into low paid or unsuitable jobs that will undermine the patient’s condition.”

    The case for mandatory treatment for people with long term conditions (first flagged up in the Conservative Party Manifesto) is currently being reviewed, including whether benefit entitlements should be linked to ‘accepting appropriate treatments or support’. Such a move would have extremely serious implications: consent is invalidated if it is given under duress, for example if it is linked to loss of benefits or the fear of loss of benefits. Nevertheless, this is precisely the direction that government policy is moving in and represents a serious threat to the independence of health professionals and to the human rights of patients.

    Unemployment labeled a psychological disorder

    The Islington pilot comes at a time when unemployment is being branded as a psychological disorder, for which work is the cure. Welfare-to-work companies bid for lucrative contracts to deliver Entrenched Worklessness Provision to ‘change the hearts and minds’ of unemployed people. There are further plans to locate iCOPE (Camden and Islington Psychological Therapies Service) staff in Islington jobcentres, compromising their clinical judgment by embedding them in a coercive ‘back to work’ environment. Commenting on these developments, Paul Atkinson, a psycho-therapist for thirty years, said:

    While health care professionals see the experience of being in sustainable employment as potentially therapeutic for some patients, it’s naive to believe that welfare-to-work policies are led by the interests of the individual unemployed benefit claimant. I am afraid the DWP is a toxic brand for most claimants, and I think for a growing section of the public”.

    Such plans also mean placing therapeutic services in a setting responsible for administering the benefits system, including sanctions. A member of Boycott Workfare said:

    Support for unemployed people has little to do with helping people apply for jobs or get useful training. Increasingly, it is about making people express a positive attitude to unpaid work and short-term, low wage jobs – under threat of sanctions or other punishments.

    Enforcing the work cure

    Justification of the Islington pilot relies on a ‘work is good for you’ mythology that denies the reality of the labour market: the stark inequalities in pay, conditions, and security that make it entirely misleading to talk about ‘work’ as if everyone benefits from it.

    For many disabled people who do have the capacity to work, gaining a decent quality, fairly paid, stable job does improve their independence and quality of life. And many disabled people do work, and others who can work yearn to have this kind of job.

    But this end of the jobs market is often closed to disabled people, with employment discrimination rife and little or no enforcement of the Equality Act. Cuts to government support, (including the access to work budget), which previously enabled disabled people who can work to gain employment, mean that disabled people have to ‘make do’ with low-paid, short term, low-end jobs for exploitative employers. While the government sinks funds into coercive programmes, funding for Motability and Access to Work has been cut – these are schemes that have provided real practical support to disabled people who wanted to obtain or stay in work. A member of Boycott Workfare said:

    “we’re always receiving complaints from people who are trying to continue with courses that would give them real skills and qualifications, who face pressure from the DWP to abandon them for workfare or farcical ‘training’ from DWP contractors.”

    For growing numbers of people, work does not provide a wage you can live on; for others, it is something feasible on some days, but then not for weeks at a time – a fact that the DWP is determined to ignore. Work is not necessarily ‘good for your mental health‘ either: for many people, especially those in unpaid or low paid, insecure jobs, the workplace is a site of long hours, exploitation, petty tyrannies, bullying and stress.

    Mental health services ‘ruining lives’

    Islington’s decision to invest in job coaches in GP surgeries comes at a time when mental health services have been neglected, marginalised and under-funded for years, when services are so bad that lives have been “put on hold or ruined” and “thousands of tragic and unnecessary deaths” have been caused. It comes at a time when many people are blocked from accessing the services and support they need, including physical health care. People with mental health problems already have a lower life expectancy of nearly 20 years, mainly due to preventable physical illness. Mental Health Resistance Network said:

    Where is the parity of esteem that the government keeps shouting about? How are barriers to accessing healthcare addressing our lower life expectancy?”

    The pilot has been designed without any consultation whatsoever with mental health, disability rights or claimant groups, who are wholly opposed to the scheme and the values underpinning it. DPAC said:

    “patients will simply not engage with the health care system with schemes such as this. They will be too afraid if the result is further pressure, further mental distress and further harm. We can see this scheme, if it is rolled out, having a tragic human cost and driving a patient to suicide if pushed. That is not what a doctor should be involved in. They should support the patient and remember the ethics of why they became a doctor in the first place: to care for the patient and above all else Do No Harm.”

    Fighting back

    Last year, plans to put Improving Access to Psychological Therapies (IAPT) services in 350 JobCentres led to major protests. 400 mental health professionals signed a letter opposing the imposition of ‘back to work’ therapy and describing linking social security benefits to “state therapy” as ‘totally unacceptable’. The protest against job coaches in GP surgeries is attracting even greater support, as growing numbers of health professionals, patients, activists and concerned members of the public come together to protect the fundamental principle of medical care: first do no harm. We will fight any efforts to merge our health services with services responsible for benefit cuts and benefit sanctions. We call on Islington CCG and its partners to immediately terminate this scheme.

    By Lynne Friedli and Robert Stern

    First published by Our NHS

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    WOWpetition was founded on twitter by a group of people, Ian Jones being one of the founding members. Most that started the group were either sick, disabled or carer’s who were concerned about the cuts to themselves and others. Social media is a great tool for disabled it gives us a voice to share concerns and information, when mobility and sickness often stops us mobilising by other methods. The wording for the first petition came from ideas and interaction on twitter by asking people to put forward ideas on the wording for the petition. Francesca Martinez was then approached and kindly agreed to be the face of the petition.

    We were delighted after a lot of hard work by all concerned to reach the 100 000 signatures I am sure at one stage some Union leaders and groups thought we were stalking them, (Mark Serwotka PCS, I apologise). We worked around our illnesses and used our strengths, like Laura Stranghetti who is our fabulous IT expert. We had numerous bloggers, tweeters and members of the group that worked hard to achieve the aim. We were delighted that we won the debate but we quickly realised the Government had no intention of assessing the impact of cuts on the individual.

    John McDonnell MP tried to push the campaign again and as the Social Security Advisory Committee and the Equality and Human Rights Commission  called for cumulative impact assessment we were hopeful. Penning claimed the Institute For Fiscal Studies said it couldn’t be done but they have since denied the comment. We felt frustrated that a party could just refuse to assess impact cuts on the individual whilst making inflicting further cuts.

    By this time the group was down to four: Ian, Laura, Carol and myself. We kept the social media face book and twitter accounts ongoing to give information on press releases and policy changes. After months of speculation before and after the general election when disabled people were left not knowing how or when more cuts would fall, I can say for myself I was left fearful of how I would survive on less funding. With 300 000 more disabled people pushed into absolute poverty then further cuts to ESA, social care and the Independent Living Fund announced we felt we had to push forward, what choice did we have? With statistics of 1 in 3 losing their mobility cars cuts were threatening me from all directions.

    We decided as a group, which is now four of us, to try and push again for impact assessment of all cuts including social care. We were seeing everyday on WOWpetition twitter feed stories of cuts and messages of fear and confusion. We knew that John McDonnell, Ian Mearns, Graham Morris and Jeremy Corbyn would support us again. Natalie Bennett from the Green party has always been very supportive towards our campaign. That SNP and Plaid Cymru are now supporting the new campaign is fabulous as we hope to keep raising the fact that the Government are failing, in our view in their duty of care to the disabled. How can you keep cutting with only impact assessments on each cut not all the cuts together? It is estimated by Simon Duffy that the most severely disabled maybe hit up to nineteen times, in whose universe is that OK?

    When you are blocked in a corner you come out fighting, like many other groups, we had to keep fighting or else the 100 000 people who signed it last time would be let down. We continue to fight as every day we hear or see stories of fear, the impact of sanctions, decisions by the DWP that are unbelievable and cuts and more cuts. Francesca kindly agreed again to be the face of the campaign and we keep fighting on like many other disability groups, charities and unions. Governments regardless of which party should not be able to abdicate their responsibility to the disabled of the UK whilst impacting their lives on a daily basis.

    Link to petition

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    Much has been written about the Work Capability Assessment, including the fact that it was deemed as being fatally flawed by the Work and Pensions Select Committee : ‘The flaws in the Employment and Support Allowance system are so grave that simply “rebranding” the assessment used to determine eligibility for Employment and Support Allowance the Work Capability Assessment by appointing a new contractor will not solve the problems, says the Work and Pensions Committee in a report published in July 2014.’

    The Work Capability Assessment was introduced by the New Labour government in 2008 and was exclusively conducted by Atos Healthcare until March 2015. The assessment is mandatory for recipients of Incapacity Benefit being migrated to the Employment and Support Allowance and for all new ESA applicants. Following much controversy, Atos Healthcare announced that they would withdraw early from the Department for Work and Pensions contract to conduct the Work Capability Assessment,

    The plan to ‘dismantle the welfare state’ was first suggested by the 1982 Thatcher governmentand has been relentlessly pursued by successive United Kingdom (UK) governments. Hence, in the Coalition government’s response to the select committee’s evidence,5 the Minister for Disabled People, Mark Harper MP, disregarded the very detailed information provided by the Work and Pensions Select Committee report that clearly listed the many serious problems still faced by those who must endure the Work Capability Assessment, to access the ESA benefit.

    Government resistance to funding long-term out of work illness/disability benefits followed the 2005 publication of the monograph: The Scientific and Conceptual Basis of Incapacity Benefits by Gordon Waddell and Mansel Aylward6, followed by the 2006 report: Is work good for your health and well-being by Gordon Waddell and Kim Burton.7

    What is constantly overlooked is that both these influential reports were commissioned by the DWP. They were both produced when Aylward and Waddell were funded by Unum Provident Insurance at the Unum Provident Centre for Psychosocial and Disability Research at Cardiff University, with funding by the American corporate insurance giant, Unum Provident, from 2003-2009. Aylward is listed as the DWP Chief Medical Adviser until April 20058 and is identified as being appointed as the new Director of the Centre from 2004.9

    The influence of Unum Provident Insurance is demonstrated in the memorandums provided for past WPSC reports10 that clearly list the transformation of Incapacity Benefit to Employment and Support Allowance. The requirement to ‘resist diagnosis’, ‘revise the ‘sick note’, ‘encourage the Government to focus on ability and not disability’, ‘change the name of Incapacity Benefit’ and ‘benefits not to be given on the basis of a certain disability or illness but on capacity assessments’ have all come to pass as Unum Provident Insurance have influenced UK Government welfare policy since 1994.11

    “At UnumProvident we have a non-medical, enabling model of rehabilitation and we are working with our partners at the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University to better understand what places people at risk of long-term or chronic illness. Further information about this model can be made available to the committee”. (item 24) Supplementary memorandum submitted by UnumProvident9

    The Scientific and Conceptual Basis of Incapacity Benefits  was, essentially, the blue print for the future introduction of the Work Capability Assessment, using a discredited bio-psychosocial model of assessment as planned following the New Labour conference in November 2001: Malingering and Illness Deception,12 with Aylward as a contributor and ‘malingering’ very firmly planted as being the motivation for claimants of disability benefits. Guilty until proven innocent was the mind-set that continues to this day. ‘And the methodology used by Waddell and Aylward is the same one that informs the work of UnumProvident.’

    The 2001 New Labour conference12, together with the 20056 and 20067 reports commissioned by the DWP, led to the 2006 Green Paper: A New Deal for Welfare: empowering people to work – an independent assessment of the arguments for the proposed Incapacity Benefit reform.13  The Scientific and Conceptual Basis of Incapacity Benefits was the main reference used to justify future drastic welfare reforms, which was exposed by Emeritus Professor Alison Ravetz as being seriously flawed.14  On closer examination, it appears that this entire body of work  is largely self-referential – that is, it appeals for validation to itself and is framed within the same political and policy agenda… It is not research undertaken in the spirit of open enquiry. It is commissioned research and, as such, pre-disposed towards ideologically determined outcomes.

    Not to be confused with a medical assessment, the Work Capability Assessment is described as a ‘functional assessment15 using an IT tick-box questionnaire and totally disregarding diagnosis.

    The influential 2007 report by the unelected David Freud,16 promoted the use of the private sector in welfare reforms when adviser to the New Labour Party and before being appointed as the Minister for Welfare Reforms in 2010 by the Coalition government. Subsequently, the Work Capability Assessment was sub-contracted to Atos Healthcare in 2008 and according to the General Medical Council, Atos Healthcare ‘have total immunity from all medical regulation.’17,18

    The Work Capability Assessment uses a manipulated biopsychosocial  model of assessment, designed in consultation with Unum Provident Insurance17,18,19,20 and is a replica of the discredited healthcare insurance assessment model historically used by Unum Provident Insurance to resist funding insurance claims.21 The LiMA IT programme used for the Work Capability Assessment was designed by Atos Origin IT Ltd, the parent company of Atos Healthcare, for exclusive use for DWP assessments.22

    The original 1977 biopsychosocial model of assessment was attributed to psychiatrist George Engel.23 Engel’s biopsychosocial hypothesis was to consider the social and psychological factors, together with the biological factors impacting on illness. It was an unproven theory that needed research. Ten years ago Professor Christopher Butler and colleagues produced a paper demonstrating that the bio-psychosocial model of assessment was ‘found wanting’ and inadequate. ‘Medically unexplained symptoms: the biopsychosocial model found wanting24 was referring to the original Engel biopsychosocial hypothesis.

    Yet, a manipulated version of the Engel biopsychosocial assessment model, emphasising the possible psychological factors of disability and disregarding the biomedical factors, is used by Unum Provident Insurance and by the DWP as a method of removing as many chronically sick and disabled people as possible from funding, or preventing access to it.17,18,19,20,21

    Unum Provident Insurance were fined $31.7 million in 2003 in a class action law suit in California for running ‘disability denial factories’18 and $15 million in 2005 by the California Department of Insurance Commissioner, John Garamendi, who stated that Unum Provident is an outlaw company. It is a company that has operated in an illegal fashion for years…’25,26

    By 2006 the State insurance commissioners of 48 American States approved a settlement in an investigation of the Unum Provident Corporation that required the healthcare insurance giant to reconsider 200,000 claims and to pay $15million in fines27 whilst not forgetting, at the same time as these fines in America for malpractice, the company were funding Aylward and Waddell at the Centre at Cardiff University.

    Unum Provident Insurance changed its name to Unum Insurance in 2007 to distance itself from increasing negative publicity for identified malpractice. Yet, the only opinions considered by the DWP regarding the benefits of work and the assessment model used to assess disability benefit claimants are those of Aylward and Waddell, whose research was sponsored until 2009 by Unum (Provident) Insurance; identified by the American Association of Justice in 2008 as the second most discredited insurance company in America.28

    In January 2007 Professor John Langbein of the Yale School of Law produced a paper identifying the ‘The Unum Provident Scandal29 that exposed Unum’s practice of disability denial, and in November 2007 BBC News reported that the British government were being advised by an American insurance company with a reputation for ‘racketeering’.30

    Employees interviewed on the Dateline program disclosed that the claims that were “the most vulnerable” to pressures for bad faith termination were those involving “so-called subjective illnesses, illnesses that don’t show up on xrays or MRIs, like mental illness, chronic pain, migraines, or even Parkinson’s.”

    The Dateline story pointed to an internal company email cautioning a group of claims staff that they had one week remaining to “close,” that is, deny, eighteen more claims in order to meet desired targets.

     

    Concerns have been expressed in a government inquiry regarding Aylward’s long association with Unum (Provident) Insurance, including links with the American corporate insurance giant when Chief Medical Adviser at the DWP from 1996 – 2005. To date there has been no formal investigation following the evidence by Professor Malcolm Hooper to the 2005 Gibson Parliamentary Inquiry.31:

    ‘There would also appear to have been a clear financial conflict of interest and possible breach of Civil Service protocol, in that a senior Civil Servant such as Aylward could not have been unaware while he was in post at the DWP that Unum Provident was already financing his next employment, which would allow him to indulge in his existing conviction that syndromes such as ME/CFS are affected by ‘cultural’ factors and are ‘behavioural’ in nature. It is also a matter of concern that a senior Civil Servant accepted sponsorship from a company with Unum’s track record.’

    After various freedom of information requests, the DWP published the mortality figures of the claimants who had died in 11 months in 2011 whilst claiming Employment and Support Allowance,32 with 10,600 people dying in total and 1300 people dying after being removed from the guaranteed monthly benefit, placed into the work related activity group regardless of diagnosis, forced to prepare for work and then died trying. Following the public outrage once the figures were published, the DWP have consistently refused to publish updated death totals.

    Unum (Provident) Insurance exposed their significant influence in the memorandum following the publication of the Welfare Reform Green Paper. Their influence has also been exposed since 2011 by the Disability News Service,33 with reports by the British Medical Association34 and the Royal College of Nursing 35 that confirmed that the Work Capability Assessment was causing ‘preventable harm’ as chronically sick and disabled people now starve to death in the UK.36

    Constant toxic rhetoric by the Secretary of State and various DWP Ministers from the Coalition government, supported by the national press quoting their often extreme comments, have successfully convinced the British public that vast numbers of chronically sick and disabled people are ‘shirkers and scroungers’ and disability hate crimes are the highest ever recorded, as identified in a 2014 bulletin by the Home Office:  ‘Hate Crimes, England and Wales, 2013/1437

    CONCLUSION

    Fifteen years ago Unum Provident Insurance was exposed in Parliament in the 1999 Permanent Health Insurance debate,38 where MPs identified the suffering of constituents as Unum Provident Insurance refused to pay out on income protection insurance policies. Given this company’s proven record of sustained misconduct and recorded malpractice over many years, one must surely enquire as to why this company have been advisers to the UK government on welfare reforms for the last 20 years.

    The constant reference to ‘disabled people’ by DWP Ministers, whilst disregarding those with catastrophic illnesses, adds to the ongoing human suffering of the most vulnerable people in the UK. They are far too ill to consider working39 but they now live in fear of claiming the income related benefit needed for their very survival, as the Coalition government consider all Employment and Support Allowance applicants as potential malingerers, thanks to Professor Aylward’s influence, regardless of what can be a devastating diagnosis.40

    REFERENCES:

    1. W&P 2014: ESA needs fundamental redesign, says MPs: July 2014 DWP Work & Pensions Select Committee  23rd July 2014: News release
    2. CROSS M: 2013: demonized, impoverished and now forced into isolation: the fate of disabled people under austerity. Disability and Society Journal DOI:10.1080/09687599.2013.808087
    3. W&P 2014: Work and Pensions Committee – First Report: The ESA and WCA Full report.
    4. The Guardian: 28th Dec 2012: Margaret Thatcher’s role in plan to dismantle welfare state revealed 
    5. DWP 2014: November, p4: Government Response to the House of Commons Work & Pensions Select Committee’s Report on Employment & Support Allowance & the Work Capability Assessment, First Report of session 2014-15 
    6. The Scientific & Conceptual Basis of  Incapacity Benefits. Gordon Waddell & Mansel Aylward 2005  ISBN: 9780117035843
    7. Waddell & Burton 2006: Is work good for your health and well-being? Gordon Waddell & A Kim Burton
    8. Institute of Primary Care & Public Health –  Professor Mansel Aylward
    9. Supplementary memorandum submitted by Unum Provident following the publication of the Welfare Reform Green Paper 2006
    10. Memorandum submitted by UnumProvident (EDP 03)
    11. Private Eye: In the back: Welfare reform – mutual benefits Issue 1302 – 11th November 2011
    12. Rutherford J 2007: New Labour, the Market State and the End of Welfare Soundings Journal: 2007:  Issue 36   summer 2007
    13. DWP:2006: A new deal for welfare: Empowering people to work
    14. Ravetz A: 2006: March: Green Paper: A New Deal for Welfare Centre for Disability Studies, Leeds University
    15. Litchfield P: 2013, p7: An independent review of the WCA, year 4, 2013
    16. Freud D: 2007, p5: Reducing dependency, increasing opportunity: options for the future of welfare to work. An independent report for the DWP by David Freud. May 2007 page 5. ISBN: 978 1 847 12 193 6
    17. Stewart M: 2011: Welfare Reform – Redress for the disabled 
    18. Stewart M: 2010: Atos Healthcare or Disability Denial Factories 
    19. Jolly D: 2012: A Tale of Two Models: Disabled people vs Unum, Atos, Government and disability charities
    20. Stewart M: 2012: Government use the might of American insurance giant to destroy UK         safety   net.     
    21. Bach M: 2011: UNUM and Business: how Unum have influenced UK Government policy to the detriment of disabled people.
    22. Bach M: 2013: LiMA tick box assessment 
    23. Engel G:1977: The need for a new model: a challenge for biomedicine. Dr George Engel  Science Journal; 8th  April 1977, Volume 196 number 4286 p 129-136
    24. Butler C, Evans M, Greaves D, Simpson S 2004: Medically unexplained symptoms: the biopsychosocial model found wanting.  The Journal of the Royal Society of Medicine:: JRSM 2004, 97:219-222 
    25. Unum Complaints: An Outlaw Company” – Online Lawyer Source 
    26. LA Times: 2005: State fines insurer, orders reforms of disability cases.
    27.  State Insurance Commissioners reach settlement with Unum Provident:  Insure.com
    28. The ten worst insurance companies in America. The American Association  of  Justice 2008
    29. Langbein J: 2007: p1318 The Unum Provident Scandal – The Yale Law School 
    30.  Government advised by ‘racketeers’ BBC News 6th   Nov 2007
    31. Hooper M: 2005: Concerns about a commercial conflict of interest underlying the DWP handbook entry on ME  and CFS The Gibson Parliamentary Inquiry – Dec 2005
    32. DWP: July 2012: Incapacity  Benefits: Deaths of  recipients 
    33. Disability News Service: Feb 2013: Unum bragged about ‘driving government thinking’ on incapacity benefit reform
    34. BMA: 2012: Scrap WCA doctors demand at the annual representative meeting. The British Medical Association
    35.  The Royal College of Nurses Congress: Disability assessmentsThe  Royal  College of       Nursing Congress April 2013
    36. The Guardian: Vulnerable man starved to death after benefits were cut 
    37. Hate Crimes, England and Wales, 2013/14 p9 – Home Office Statistical Bulletin
    38.  Permanent Health Insurance debate; House of Commons, Westminster Hall, 21st December 1999. 
    39. Mental Welfare Commission for Scotland: Who benefits? The benefits assessment and death of Mrs DE. Investigative report.
    40. Stewart M 2014: UK Government refuse to accept responsibility for crimes against humanity.

    This was first published on Researchgate

    Tagged , , | 7 Comments

    Switching from “one size fits all” to a personalised approach based on free open source kitchen  design software could dramatically slash the annual cost of adapting the homes of elderly patients on their discharge from hospital.

    Research from occupational therapy and computer science academics from Brunel University London shows that more than half of the costly equipment from shower chairs to grab rails installed in their homes for such patients is ever actually used.

    The Brunel solution could also speed up the whole process of pre-discharge home visits by occupational therapists (OTs) relieving hospitals of “bed-blocking” elderly patients who are healthy enough to go home at a further cost of more than £500 a night.

    Explained Dr Arthur Money, who led the team: “Pre-discharge home visits are routinely carried out to make sure the transfer from hospital to home is safe for the patient.

    “But there are issues not only with the speed of the process but the lack of shared decision making which leads to more than half of assistive equipment installed not having been used when OTs make follow-up visits.”

    He added: “While some adaptations may fall into the not-needed-yet-but-will-be-category, many patients end up with equipment they don’t understand how to use or is useless because it is installed at the wrong height.

    “And many patients find the home visit itself demoralising, daunting and anxiety provoking. Our software turns the home visit into a collaboration between patient and OT.”

    Dr Atwal (left) and Dr Money

    Dr Atwal (left) and Dr Money

    OT lecturer Dr Anita Atwal says the software also helps bridge the information gap where elderly people are not quite sure what a piece of equipment is or does but are reluctant to show their ignorance to an expert.

    “As OTs one of the most striking lessons from the research is when older people were placing items of what to us is part of our everyday work in the wrong places – quite clearly not understanding what the equipment was for.”

    Fellow Brunel OT lecturer Lesley Wilson added: “It also became clear that while the hacked interior design software is a great tool for both patient and OT it needs to be used in a partnership approach.

    “Older people using it hands-on in our study were very clear they saw it as a great tool but one to be used together with their OT. And many have already encountered versions on the High Street from estate agents to kitchen design outlets.”

    The team plans further developments to the software in the next phase of the research including the ability to introduce the patient into their adapted virtual home by building accurate to real-life scale avatars.

    Said Dr Money: “Just in the same way as different people want a different kitchen counter height items such as grab and hand rails need to be installed at a comfortable height for the patient.  Introducing avatars will help OTs get that aspect right.”

    Using the Technology Acceptance Model to explore community dwelling older adults’ perceptions of a 3D interior design application to facilitate pre-discharge home adaptations

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    Personal budgets are in the headlines after Pulse published research based on FOI requests to CCGs.  The headline on BBC’s Today programme was “Treats instead of Treatments” and the line promoted by Pulse was that Personal Health Budgets (PHBs) lead to inappropriate ‘non-evidenced based’ spending by the NHS. The examples provided included a summer house, a Wii Fit consul, an iRobot, holidays, horse-riding, music lessons and a sat nav device; or as Pulse put it in their scare headline:

    “NHS allows patients to splash cash on holidays, summer houses and Wii Fits.”

    Interestingly this shock headline generated the most intense media interest in the idea of a personal budgets in my career. I have been working on these ideas since 1990, and invented the concept of personal budget.  I have seen how powerful it can be for people to have more control, choice and creativity in their lives; although I’m also very aware of how good ideas can come unstuck and be corrupted.

    Thomas Edison once said of innovation, “The worst is to come, for it takes about seven years to convert the average man to the acceptance of a solved problem.” However I think that when it comes to the welfare state seven years is something of an under-estimate. Government can both resist and distort innovations, and the normal rules of human behaviour don’t apply when you are dealing with vested interests of the civil servants, politicians and the professional establishment. As Robert Townsend put it:

    “It’s a poor bureaucrat who can’t stall a good idea until even its sponsor is relieved to see it dead and officially buried.”

    However, once Government does get hold of an idea then everything changes. After the New Labour Government became enthused by these ideas in 2005 I watched them, quite naturally, slip from my control, and that was a humbling experience. So it was interesting for me to find myself defending personal health budgets on the BBC and Sky when they are now being implemented by a Government that I despise.

    Looking at the report by Pulse in detail is also interesting, both for what it reveals and for what it hides. It provides a useful indication of the overall level of spending on PHBs, estimated at £123 million per year for 2015-16, which is just over 0.1% of NHS spending. Yet I suspect that the amount spent on things Pulse deems inappropriate must be minuscule, and I could find no relevant data.

    Furthermore we learn that the number of people using PHBs is 4,800, which suggests an average package cost for individuals of £25,600. This is a significant sum and it probably reflects the fact that PHBs have been targeted on those people with most significant needs, often people on continuing care packages. However, this fact, and the significant needs of those using PHBs, was not mentioned in the report.

    Another interesting point raised by Pulse was the fact that, in a survey of more than 1,500 patients by the Patient Information Forum, more than half of patients with long-term conditions felt they would be ‘unable to make decisions’ on spending a PHB. I must admit to be confused here. Surely this means that a significant number of people do feel ready to make such decisions. That sounds like a great starting point for an emerging innovation like PHBs. There is clearly significant interest and demand already.

    The Pulse report also touches on some of the real issues, for example: How do we define who is eligible and what level of funding should be made available? Dr Brian Fisher rightly suggests these issues are critical and that without the necessary controls PHBs could become unaffordable. However I doubt this is the main risk for the current programme. Progress in implantation remains slow and getting a PHB is far from easy. If funding levels are successfully set around current norms then the programme will continue to generate efficiencies – not increased costs. However effective implementation will be vital if efficiency is to be guaranteed.

    In contrast to this, Pulse also argues that these individual arrangements may lead to the opposite problem – increased cost-cutting. In the UK’s current context I suspect this is the bigger risk. Monolithic and institutional services are much harder to cut and much easier to defend; and while the 30% cut to social care in England may not have been caused by the use of personal budgets it certainly certainly hasn’t help to defend social care from this assault.

    However the one example of cost-cutting provided by Pulse is problematic. Pulse cites a day centre that was forced to close because its funding had been put into personal health budgets. I must say this sounds quite odd to me. NHS money isn’t labelled in advance like this. Surely if the money ear-marked for personal health budgets (0.1% of spend) could not be used to fund the day centre then some of the other (99.9%) NHS spending could have been used? It sounds to me like somebody’s been making up excuses:

    “Sorry, we just had to close your day centre so as to fund these wacky personal health budgets.”

    In reality there was clearly not enough support from within the CCG to justify funding the day centre. More importantly, this touches on a profound weakness in the Pulse argument. If personal health budgets are of any value then they must allow people to change how money is currently used. If money is used differently then it cannot be used on the things that it was spent on in the past. Is this really a bad thing? Do services have a divine right to exist? Moreover, while Pulse questions the evidence base of PHBs, what is the evidence base for mental health day centres? People do not use day centres because it is a carefully thought through and personalised solutions to their needs. People use day centres because that is where the system has historically invested money.

    The final major criticism mentioned by Pulse (although interestingly not picked up by any of the media I spoke to on the day) was the ideological question: isn’t personalisation just a right-wing neoliberal idea? Now, personally, this is the most puzzling criticism for me. I am still struggling to understand how shifting socio-economic power to disabled people or to people with long-term health conditions is right-wing. I still don’t understand why leaving power with the NHS bureaucracy or medical establishment is left-wing. We’ve got something very muddled here.

    Of course I can see that there is a severe danger that the current trend to ‘target’ ‘means-test’ and ‘privatise’ may be used to undermine the principles of the NHS. However I suspect that the real risk comes from the 8-9% of NHS spending that has already been privatised to the likes of Virgin.  It is private companies, not citizens and patients, who will eventually undermine the NHS, if we choose to let them.

    Behind the headlines and the arguments what is clear is that many in the medical establishment are not convinced of the benefits of PHBs and are now willing to be much more aggressive in their resistance to their expansion. So, the question we must ask is why? I can see at least two possible hypotheses:

    1. Senior doctors and others are genuinely concerned with the well being of the welfare state. They wish to defend the principles of free and universal services and to reduce inequality and poverty in the UK and they genuinely believe that personal health budgets threaten the welfare state.

    OR

    1. Senior doctors don’t want to share power with patients. They are worried they will lose control and that ordinary citizens will have more control individually and may start to ask more challenging questions collectively.

    Both these hypotheses would explain the extreme scaremongering that we find in the Pulse report. I hope the first hypothesis is true. For if it is the first hypothesis that is true then, over time, more and more doctors will see the benefit of personal health budgets and will understand that it doesn’t have to threaten the NHS but can be part of extending the principles upon which the NHS was built. Personal and citizen empowerment is what the NHS should be about.

    Moreover if these current fears reflect a real commitment to social justice then I expect to see the BMA and other leading professional bodies come into alliance with disabled people, trade unions and with the braver charities, in order to challenge the current Government’s vicious attack on the welfare state. We will see active protests to:

    • The selling off of the NHS
    • Deep cuts to social care and the means-testing of social care
    • Cutting benefits, especially for disabled people and people who are sick

    One interesting test is coming up soon, for the UK Government is currently being investigated by the UN for breaching the human rights of disabled people. I look forward to clear and powerful statements by the BMA supporting the rights of disabled people to have the resources that are necessary for them to be full citizens – whether those resources come from the NHS or from elsewhere.

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    A long-awaited information standard was launched on July 3 by NHS England that will improve healthcare for millions of people has been welcomed by Action on Hearing Loss (formerly RNID).

    The standard requires all NHS and adult social care organisations to meet the communication needs of people with a disability, impairment or sensory loss by 31st July 2016, including the one in six people living with a hearing loss. It will include making sure patients get information in suitable formats and that, if needed, support from British Sign Language (BSL) interpreters is guaranteed.

    A survey of over 600 people with different levels of hearing loss to explore the experiences they have when accessing healthcare found:

    • One in seven respondents (14%) had missed an appointment because they had missed being called in the waiting room.
    • more than one-quarter (28%) of people with hearing loss had been left unclear about their condition because of communication problems with their GP or nurse
    • 68% of profoundly deaf British Sign Language (BSL) users asked for a sign language interpreter for a GP appointment but did not get one. 41% of BSL users left a health appointment feeling confused about their medical condition because they couldn’t understand the interpreter.
    • One in seven missed an appointment – the NHS estimates this costs £14 million in England every year due to missed appointments.

    Roger Wicks, Action on Hearing Loss’s Director of Policy and Campaigns, said:

    “It is vital that everybody understands the information and advice they receive from their GP or hospital. The Accessible Information Standard is the first time the NHS has provided clear guidance on what people with hearing loss and deafness should expect from health and social care services, and what staff should provide. So long as it’s properly implemented, it will enable patients to access services, to understand information they are given, to manage their own health and to participate fully in decisions about their treatment – things that many of us take for granted. While it can’t be denied that these adjustments will come at a cost, it’s now time for providers to acknowledge hearing loss for the serious health issue that it is, and to reap the benefits of enabling proper access.”

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    A recent article in the Guardian drew attention to the BBC’s current efforts to increase the numbers of disabled people on and off-screen. Tania Motie and Tanni Grey-Thompson argued that there are three stereotypes applied to disabled people – we are heroes, scroungers or brave victims. The BBC, they wrote, has a role in challenging this, and that:

    Sophisticated, multi-faceted, authentic portrayal influenced by disabled people will really help to break down barriers and allow disability to become part of the DNA of our society.

    This reminded me of how, 23 years ago, in 1992 – which like 2015 was also a general election year – the BBC launched a series of programmes made with and about disabled people, together with a booklet and poster advertising.  The series and the booklet were called Disabled Lives:we wanted to call it Disabling Society but Channel 4 had got there first with their own series that same year. The initiative resulted from an Advisory Group made up of disabled people brought together by the BBC to help them  develop programmes which challenged the stereotypical and unrealistic ways in which disabled people’s lives were portrayed.It sounds familiar doesn’t it? But there were some differences.
    The key difference is that, in 1992, disability was increasingly being identified as a civil rights issue, whereas today public debate is dominated by arguments and counter-arguments about whether we are ‘scroungers’ or ‘vulnerable’.The 1992 booklet said that it, and the BBC series of programmes, was about:

    one of the most exciting civil rights issues of our times, the right of disabled people to participate equally and fully in the communities in which we live….Today, there is a growing movement of disabled people who insist that our lives have value and that we want to be treated as equal citizens with equal rights.

    This was before the Disability Discrimination Act which was finally passed in 1995 after many years of campaigning.  The programmes and the publicity gave a voice to this demand for an end to discrimination, but also emphasised the importance of changing the dominant cultural representations of disabled people, arguing – as Elspeth Morrison (one of the Advisory Group’s members) put it:

    If we have no representation of ourselves other than those images used in charities’ advertising, crippled witches in children’s books, brave and tragic media stuff, theatre and film’s metaphorical use of disability as social inadequacy, social decay – if there is no expression of life as we live, it, how do we begin to validate ourselves and learn about each other?

    One of the photographs (taken by David Hevey) used in the booklet and in the posters  – was of the Direct Action Network holding up a bus in Manchester.  No buses were wheelchair accessible at that time and access to public transport was an important part of the campaign for anti-discrimination legislation. Independent living (having choice and control) was also a key focus, for people with the whole range of impairments and across all ages. The Independent Living Fund had been established in 1988 and more and more people with high levels of support needs were accessing it and starting to live the kind of lives their non-disabled peers took for granted. In general, more disabled people were demanding, and getting, their entitlements to support to enable them to go about their daily lives.

    Organisations of disabled people (as opposed to the charities speaking for disabled people) were increasing in number and influence in the early 1990s, reflected in the fact that the people on the  BBC’s Advisory Group were mainly from organisations of disabled people.  The initiative encompassed Deaf people, people with physical and/or sensory impairments, people with non-evident impairments and health conditions, people with learning difficulties, mental health service users and older disabled people.  As People First (the organisation of people with learning difficulties) said:

    • We are for difference
    • For respecting difference
    • For allowing difference
    • Until difference
    • Doesn’t matter anymore.

    In the early 1990s, the most influential stereotype of disabled people was of us as objects of pity, as tragic victims who, at best, could be admired for ‘overcoming’ against all odds, at worst were considered to have lives not worth living.  The response of a government Minister to one of the petitions calling for anti-discrimination legislation was to say that he didn’t believe employers discriminated against us, rather they felt sorry for us.

    Nevertheless, in 1992 things were shifting.  In the run-up to the general election, the Conservative Party (in government since 1979) devoted a specific section in its Manifesto to commitments to disabled people, celebrating that:

    Under the Conservatives, more disabled people than ever before are getting the help they need and deserve. Since 1979, the number receiving Attendance Allowance has more than trebled; the number receiving Mobility Allowance has risen six fold; the number receiving Invalid Care Allowance has risen 25-fold. Today we spend some £12,000 million a year on benefits for long-term sick and disabled people. Even after allowing for inflation, that is 2½ times as much as Labour spent in the 1970s.

    The Tories promised to introduce “new disability benefits [Disability Living Allowance and Disability Working Allowance] which will, in the next Parliament, bring extra help to at least 300,000 people. By 1993-94 these and other improvements will mean that we will be directing an extra £300 million a year to long-term sick and disabled people.” They were proud of the “great success” of the Independent Living Fund and gave a manifesto commitment to maintaining it.
    The Labour Party had very little to say about disabled people in their 1992 manifesto. There was a nod to ‘training’ opportunities, to health services for people with long-term conditions and to better community services for people using mental health services and for people with learning difficulties.  The Liberal Democrats’ manifesto had more, committing them to introduce a Citizen’s Income with a specific disability component, human rights legalisation (to include disability) and a Charter of Rights for disabled people.
    In those days, very few people argued that too much was spent on disability benefits. Very few people thought that disabled and sick people were making false claims for out of work or disability benefits.
    In fact, in 1992 the Conservative government felt that not enough disabled people were being helped and introduced new benefits for which more people were eligible.  Today the Coalition government argues that too many people are receiving help with the additional costs associated with impairment and disability. The Disability Living Allowance – which the Conservative government of the early 1990s was proud to introduce – has been abolished and replaced with Personal Independence Payment with the aim of reducing the budget by 20% and accompanied by such long delays in responding to claims that a Judicial Review has been granted of the process.

    In 1992, the government were proud of the Independent Living Fund and vowed to keep it.  Today, they have abolished it and many people with high support needs are at risk of losing the ability that ILF funding gave them to live ‘ordinary lives’. In 1992, disability was a civil rights issue and we were on our way to getting the Disability Discrimination Act, enacted by the Conservative government in 1995.  Today, access to justice under the legislation has been severely undermined by cuts in legal aid,  and the introduction of fees for taking a case to an Employment Tribunal.

    In 1992, public debate was about whether disabled people were to be pitied as the objects of charity and needed to be ‘looked after’, or whether we should have equal rights to access education, employment, independent living.  Today, public debate is about whether we are avoiding our responsibilities to seek employment and need conditions and sanctions to get us ‘off benefits’, or whether we are ‘vulnerable’.   Instead of recognising the additional support, and the removal of barriers, which are required in order for us to access the same opportunities as others, we are – in order to avoid being labelled as ‘scroungers’ –  once again forced into the role of tragic victims, where the legitimacy of our requirements is to be measured by how ‘vulnerable’, ill and/or impaired we are.

    So if we are to avoid being identified as ‘scroungers’, we have to prove how ‘vulnerable’ we are made by our impairments, illness and/or age.  Yet ’vulnerability’ is created by the society in which we live – by lack of appropriate support, and by prejudicial attitudes. ‘Vulnerability’ is created, for example, by removing benefits from someone because they failed to fulfil conditions which illness, impairment and/or poverty made difficult for them to do. ‘Vulnerability’ is created by threatening to stop providing support to enable someone to go to the toilet when they need to. ‘Vulnerability’ is created by a lack of suitable, affordable housing for a family affected by illness and disability.

    Tackling discrimination, removing barriers, providing appropriate support which gives us choice and control in our lives – none of these are on the agenda for public and policy debate anymore. Instead, our social worth is to be measured by whether we are ‘hard-working’, which means engaged in productive labour.  Other important social roles – looking after others, bringing up children, contributing to our friends, families and communities – are not deemed worthy of support or celebration.
    The BBC’s current initiative – all these years after the 1992 initiative – to increase the numbers of visible, ‘happen to be’ disabled people on screen and to increase their employment off screen is laudable.  But we also need to change the language of public discourse about sick and disabled people.
    In particular, we need politicians, and all those participating in public debate in the run up to the election in May, to change the way they talk about disabled people.  We need to revisit the language and images the disability movement tried so hard (with some considerable success) to promote during the 1980s and 1990s – language which returns to some of the hopes reflected in the BBC’s booklet all those years ago:

    Disabled people are fighting for a society which celebrates difference, a society which does not react to physical, sensory or intellectual impairments, or emotional distress,, with fear and prejudice.  We want a society that recognises the difficulties we face, but which also values us for what we are.

    Our hopes for the future are based on the justice of our wish for control over our lives, the strength of our demands for equal participation, the passion of our belief in the value of our contribution to the communities in which we live.

    First published on Jenny Morris blog

    Comments Off on A tale of two general election years

    I am honoured to have been invited to write a response to Andy Burham’s recent speech on his vision for an integrated health service, in relation to how it affects disabled people. Before I begin I think I should assist in avoiding any confusion by explaining I am not that Simon Stevens, the one in control of health services in England. Instead, I am an independent disability consultant with 20 years experience of social care as a service user and someone working in the field in many ways.

    Labour is promising a fully integrated health and social care system hailed as one service that meets everybody’s needs. It should be firstly noted this is very different to the parallel ‘National Care Service’ they were proposing just before the last election. While the integration of health and social care looks logical and promising, for disabled people of working age particularly, this concept could be quite damaging.

    To understand this, it is important to explain some context. Labour left Government in 2010 when personalisation was the key theme of social care policy. It must be understood that personalisation was a professionals friendly step-down to full independent living as defined by the old disability movement. At this time, personalisation was already a disappointment to most as professionals have watered it down to meaningless words, but it was better than nothing.

    The last 5 years has seen Winterbourne and the rise of the carers movement as the right of carers appears to have been given priority over service users by this Coalition government. At the same time, a new and vocal ‘sick and disabled’ movement has grown out of the opposition to the welfare reforms, demanding welfare over inclusion and independent living, leaving many disabled people, particularly those with high support needs, out of the political agenda. This means Labour has lost its historical links with the independent living agenda as it now simply sees disability as a welfare issue as it promises to deliver Iain Duncan Smith’s reforms better than he could.

    This means the integration agenda could be a convenient opportunity to retire personalisation as the priority appears now to be reducing hospital admissions and bed blocking, rather than a quality of life as social beings which people require to be included and active citizens. The priorities scare me because it has the potential to undo social care and under the control of health, potentially revive long-stay hospitals as a convenient way to cheaply manage people.

    Social care is not just about preventing falls or allowing quicker hospital discharges. If we add the ever growing power of the carers movement, which has mostly squashed independent living out of the agenda, I predict things can only get worse for disabled people unless there is a major shift in the culture of health and social care towards independent living and including social based outcomes. It is highlighted by Andy Burham’s remark that ‘severely’ disabled children now live longer and may even need adult services. This is a very odd thing to say as it is firstly totally out of date as there is not a sudden crisis in the transition between child and adult services, a problem that has always existed. But more worrying is that it shows some welfarist prejudice, as he suggests children with high support needs just need warehousing, under the direction of their carers (as no one has parents anymore), to continue into adulthood as the need for a decent education and employment opportunities appears to be irrelevant.

    Labour’s policy is confirming the general welfarist thinking on disabled people in terms of those fit for society and employment opportunities, and those who are unfit for society. When Labour still wants to ‘look after’ old people like they are all war heroes without a mind of their own, it is clear disabled people who require social care are automatically deemed unfit for society, mindless objects of pity who will be controlled by this integrated system.

    I want Labour to be fully committed to independent living and inclusion for all regardless of age, but I fear they will simply set up a new and improved Independent Living Fund, reinforcing the two tier system we have now where only those who demand independent living gets it, where people like myself remain ‘lucky’, while the rest are warehoused or left as the property of their families.

    Enablement and Empowerment are cornerstones of an effective and cost efficient health and social care system, but when professionals fight to keep their jobs and control of their piece of the cake, costly disempowerment will continue to be the order of the day and so any new money will simply be swallowed up by empire building. This means that unless Labour is willing to replace the engine of the new “NH&SCS”, as opposed to simply giving it a new spray job, it will be business as usual in this new game of musical chairs.

    I fear Labour’s plans are going to potentially destroy social care in terms of personalisation and independent living, as its bigger brother, Health, takes centre stage making all the demands. Unfortunately, it is a bit late for this election to go back to the drawing board to design a better policy!

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    Labour Party Policy for Disabled People Discussion paper by Liam Byrne & Anne McGuire  asks:

    We have to ask how do local councils, the DWP and where needed the NHS, come together to offer one assessment of the health, social care, benefits and back to work support that disabled people might need?

    The right to health; to be skilled and knowledgeable; to be able to work if you can; to have a roof over your head; to live free from fear of attack; to have a family; to be part of a community; to be able to move about; to have aspirations for the future.

    What are the basic rights of disabled people which this government is putting at risk?

    The Right to Work

    Labour has said it’ll keep the Work Programme if it’s cost effective and delivering. But it’s clearly not delivering for disabled people.
    Do you have experience of current employment support programmes such as the Work Programme, Access to Work, Work Choice, or other support provided by your local authority? What was your experience of these programmes and what are the key changes you would like to see to help more
    disabled people into work?

    How can disabled people be better supported to take up work experience, volunteering or entrepreneurship? How can disabled adults be supported to access further and higher education?

    How would you like to see initiatives like supported employment evolve, and how can disabled people be supported into fulfilling careers, rather than simply jobs?

    How do you ensure that the route from benefits to work is more transparent for the disabled person and prospective employer?

    It is in employers’ interests to recruit and retain talent from the widest possible pools. What can employers do to help disabled people get into work and stay in work?

    How can carers be better supported to stay healthy, and juggle work and care?

    What can be done to help narrow the pay gap between disabled and non disabled people?

    The Right to live independently Britain’s social care system is in crisis, and disabled people must be included in the debate on how to change it. What support do disabled people need on a day to day basis, and how could they be assessed for this support?

    How will government reforms jeopardise disabled people’s ability to live independently?

    Could DLA have been successfully reformed or did we need a new benefit? If so, what changes would you like to have seen?

    How do you think WCA should be changed?

    What is the best way to join up support provided through DLA, ESA and Social Care?

    The Right to a home

    What changes would make a reality of disabled people’s right to a home?

    How can disabled people who want to move into their own home be better supported?

    How are disabled people affected by the government’s cuts to Local Housing Allowance?

    The Right to a family life

    What changes do disabled people need to help them as parents?

    What changes do parents of disabled children need to help them?

    How should we support disabled children and young people to become involved in decisions about their lives?

    Does the focus on purely educational outcomes meet the needs of disabled children and young people?

    Right to live free of crime

    How can we stop the escalation in hate crime towards disabled people?

    How can we tackle stigma experienced by disabled people and carers?

    Should ministers be doing more to tackle negative public attitudes towards those genuinely in need?

    Are there new safeguards that should be put in place to protect disabled people? If so, what are they?

    Please contribute to the debate by responding to the questions, or telling us anything else you think would be valuable at byrnel@parliament.uk.

     

    2 Comments

    This campaign report relates to the current difficulties faced by many disabled people trying to keep Jobcentre Plus’ Access to Work funding, including myself. Access to Work as been a scheme in existence for many years that provides disabled people support while they are at work.

    In recent months, there has been unpublished changes to the scheme that has made it very difficult to access support. Due to new and potentially unfair rules, which may have been ill-designed, many disabled people including myself have had their support stopped. The aim of the report is to highlight the issues as the first stage of reversing these cuts.

    Considering this government has specifically made a big deal in supposedly supporting disabled people into work, it is outrageous for the government to actually make things harder for those disabled people who do work, especially when they have high support needs. These secret cuts to Access to Work must be exposed and reversed as soon as possible.

    Background Information

    No Access to Work

    I am a leading independent disability issues consultant, researcher, trainer, controversial inclusion activist, campaigner, and social change agent, based in Coventry (UK) with vast experience and expertise in a wide range of fields including disability equality, independent living, health policy, social care, lifestyle advocacy, employing personal assistants and Secondlife. I have worked with many organisations of all types since 1992 nationally and internationally and I am also founder and owner of Wheelies, the world’s first disability themed virtual nightclub, and star of Channel 4’s disability prank show, I’m Spazticus as well as being a blogger for the Huffington Post. I also have cerebral palsy that affects my speech, balance, hand control and sense of humour (in a positive way).

    I currently have 30 hours per week funding towards my personal assistance and support from Access to Work for the hours between 10am and 4pm Monday to Friday. The support covers personal care, assisting with phone calls, support getting to and during meetings, forms and anything else I may need. Without this support I will be unable to work and would be severely compromised. If I was to be forced to give up work, this would severely affect my mental wellbeing, likely to cause a downwards spiral towards suicide.

    I also have an electric wheelchair from access to work and I am still in the middle of an application for a specialist office chair due to issues with my posture, although the application has been halted. Without the office chair, I am experiencing additional unnecessary back pain.

    I have received support from Access to Work for 16 years, between 1998 and 2008 as Chief Executive of my own company, and from 2008 as a self employed person. During this time until now, I have had no issues with my support.

    The problem

    The reason I have had my Access to Work stopped was that in August I was ‘invited’ to submit evidence that I was self employed in relation to my office chair application including 3 years worth of business accounts, my self assessment tax returns, and a Class 2 National Insurance bill. As a low earner on tax credits, I was unaware of self employment national insurance, which I explained. Without clarifying the situation with the NI, my application was rejected and I was informed I had to request a ‘reconsideration’, a term never used before that is only supposed to relate to benefit appeals.

    In contacting HMRC on this matter, clarifying I had properly registered with them I was self-employed, they informed me I did not need to pay Class 2 Contributions because I received Disability Living Allowance. I thought it was odd but they sent me a letter confirming I was self employed, which I sent to Access to Work as a part of my reconsideration request.

    A few weeks later I received a letter from another part of DWP saying that the reason I could not pay Class 2 NI was that I was still receiving Incapacity Benefits Credits since before 1998, and I needed to send them the date I became self employed to get this sorted. This sounded promising BUT before I could answer, I received an letter to say my application for my chair has been rejected again, and also my support will be stopped in 2 months, although I could reapply!

    The matter is far from resolved and logic would say they had given me time to sort out where I stand with the National Insurance. I am now left in limbo with a system I find difficult to communicate with, with the greatest crisis of my personal support in ten years, with all the additional stress, anger and frustration that goes along with this.

    From what I have heard from other disabled people, I am deeply concerned that even if I resolve the issue of my National Insurance, Access to Work will find other reasons to unfairly reject my support including my profitability.

    The concerns

    The situation has highlighted a number of concerns I have regarding the process. I could go into more details but I do not want to spend more time I should be spending on my work on this, so here are the highlights;

    1. It is now impossible to have direct contact with Access to Work advisors, having to go through to a call centre and deal with people who are unable to answer any question directly.

    2. I was ‘invited’ to provide evidence of my self employment within 7 days with no prior knowledge

    3. Some members of the contact centre were extremely rude and unwilling to allow my personal assistance to translate for me

    4. I made a complaint previously with my reconsideration that has been ignored

    5. The attitude of the advisors is impersonal and shows no understanding of the scheme

    Solutions

    To resolve the situation, I formally request the following happens;

    1. Access to Work duly recognises I am self employed and restores my support with immediate effect

    2. Access to Work compensates myself and other disabled people for the unnecessary stressed caused

    3. A senior DWP manager meets with me at my home/office to explain to me what is going on and respond to my concerns

    4. A immediate independent investigation is started into the current difficulties faced by disabled people using Access to Work

    5. A full guide to the rules and regulations of Access to Work is published

    Conclusions

    I pick my fights carefully and I always aim to win. It is disgraceful that a scheme designed to help disabled people into work, is now forcing people to give up work as it is corrupted by the current toxic culture within DWP. This issue needs to be exposed and resolved as a matter of urgency, whatever it takes.

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    Disabled people generally, and those in receipt of social security payments in particular, have been at the harsh end of this government’s policies and rhetoric. It is disgraceful that the most vulnerable are being asked to shoulder the lion’s share of the cuts.

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    Labour MPs rightly hold a mirror up to this government and its record – their cuts, their bedroom tax, their war of words – but too often those are stories not in the first person, they are stories of others. Disabled people need to speak for themselves and have a place in the cockpit of the nation. The situation is about to get worse as David Blunkett stands down in 2015. And although Anne Begg is a huge asset to Parliament, which disabled people will be joining her and replacing Blunkett?

    Tuesday’s National Executive Committee (NEC) equalities committee, and later the ‘org sub’, will be debating what Labour can do to better support disabled people seeking public office, especially those who want to stand for Parliament. The growing acceptance that our processes are not only expensive and timely, but exclusionary for some of the very voices that we should have on Labour’s benches, has led to a debate at the top of the party on the issue.

    For those disabled people who want to go for selection, they face great challenges. Mark Cooper, disability campaigner, shed light this:

    “I often am asked why aren’t there more disabled people in political office. The answer is a complicated one with factors such as the fact that not all selection meetings are in accessible venues or they think the campaign would be too exhausting for them. The underlying cause of it all, though, is that political parties are not accessible to disabled people and others. By access I do not mean physical access but I mean access to understanding what a party stands for. This is important because if a person does not relate to a party’s views then they will not join it and then possibly put themselves forward for selection to be a candidate.”

    In the last year of the Labour government, Harriet Harman, as Minister for Women and Equality commissioned the Speaker’s Conference on Parliamentary Representation to look at many of these issues. In her submission she wrote:

    “Disabled people are also held back from participating in civic life by time pressures. A study by the Office of Disability Issues showed that ten per cent of disabled people mentioned at least one attitudinal barrier to them getting more involved in clubs, groups and the local community. In addition, nine per cent of disabled people said that issues related to access prevented them from getting more involved, including transport or travel problems.”

    Following the speaker’s conference in 2009-10, the Access to Elected Office for Disabled People Fund was created. They give bursaries to aspiring candidates of between £250 and £40,000 to help with the ‘additional disability-related costs’ of party selection processes.

    While it is a huge step forward there are considerable problems with the fund. First, as it refers to on the front page of its website,  the ‘fund is a limited pot’. The public good of Parliament reflecting the very people it says it represents makes it worth extra money for this important cause, even when money is as tight as it is now. The Labour Party should commit to doing this when elected next May.

    Second, the disabled person granted support has to meet the agreed costs upfront and claim back the money from the fund at a future date. This can be a considerable barrier for many disabled people seeking selection. Expecting disabled people, whether dependent on benefits or not, to have the accumulated funds and cash flow to not only cover the costs of selection, let alone the additional costs, is in too many cases just unacceptable.

    There is a really easy solution to this. The Labour Party should act on behalf of the disabled applicant and step in the help their cash flow. The party can claim back these costs –  as a third party provider – from the Access to Elected Office for Disabled People Fund itself. This would cost the Labour party nothing but do a huge service to our disabled members afforded the opportunity to get additional funds but unable to make the initial outlay. Regional offices would be well places to provide these services.

    In addition, the Labour Party should lobby the Speaker of the House of Commons and those who administer the Access to Elected Office for Disabled People Fund for further changes to the working of the fund.

    Finally, the fund should develop a direct relationship with each of the political parties and their respective disability groups like the Labour Party Disabled Members’ Group. The fund’s advisory committee is made up from those with an ‘expertise in a range of disability and electoral issues. The members of the panel are independent and do not represent the views of any political party or organisation.’ A direct dialogue, if not a reference group made up of the political parties themselves, could improve the service and nature of the fund considerably.

    There are also problems closer to home. Direct discrimination from our own members is much too common. It is a hard truth but we have to face up to it. The comments, coded or otherwise, have no place in the party of equality. Dealing with these issues is not easy – if they were it would have already been sorted. With real urgency, the Labour Party should work with the Labour Women’s Network, BAME Labour, LGBT Labour and the Labour Party Disabled Members’ Group to develop complaints procedures that deals swiftly and appropriately with allegations of sexism, racism, homophobia or discrimination against people with disabilities.

    For too long action has been promised but results have been lacking. This week is the chance for this NEC to start to correct that. The next NEC has an obligation to follow this through and take it further.

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