DLA Reforms : What the disability community can learn from the experience of people with ME

"The rhetoric sounds great – 'We're going to focus on what you can do and not what you can't do' – but we all know that what that really means in practice is getting tougher and setting the bar higher." He adds: "What worries me is the idea of a future Tory government going further, faster down this track and already budgeting for millions of savings, saying there's obviously people who don't need this money."   Steve Webb,  Minister of State to the Department for Work and Pensions, just before the election, commenting upon the Government’s Welfare to Work programme (Melissa Viney 2010)

“The reasons given for DLA reform are not robust, with little evidence to support the case for reform and, more importantly, no independent academic research. “(Broken of Britain 2011)

The paper-thin case for reform of DLA , is based upon bringing DLA into line with a “21^st Century” view of disability (Para 14) ;   in reality it simply  builds   upon  the work of New Labour , who in 2007  heralded the introduction of Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA) as "A new, progressive vision for our welfare system ." (Peter Hain 2007)

The WCA , like the proposed PIP,  ignores the underlying serious of a person’s condition . This extraordinary,  counterintuitive,  reasoning  has its roots in the American right's philosophy that the poor are the cause of their own poverty because they fail to take advantage of the opportunities "available" to them. (Jonathan Rutherford 2008)

It all began in 1994, when  the Conservative Government brought in UNUM, the giant American Medical insurance Company, to advise them on welfare reform.  In 1999, Mansel Aylward, an original member of that group, now as Chief Medical Officer at the DWP, devised the new Personal Capability Assessment (PCA), that was contracted out to Atos Origin, where the " emphasis was no longer on entitlement, but on what a person is capable of doing."

The intellectual basis behind the PCA was UNUM's "The Scientific and Conceptual Basis of Incapacity Benefits ", written by Mansel Aylward, which is based upon a psychosocial model one designed to "liberate" the disabled from the " medical model" of illness .

Note the repeated emphasis in the current  DLA Reform Consultation paper , upon the “social” model of disability.

According to the psychosocial model, under which untold tens of thousands of people with Myalgic Encephalomyelitis have suffered  : " Disease is the only objective, medically diagnosable pathology. Sickness is a temporary phenomenon. Illness is a behaviour social phenomenon rather than a health problem. The solution is not to cure the sick, but a "fundamental transformation in the way society deals with sickness and disabilities.”

The transformation is  this : " Sickness is a social and cultural phenomenon rather than a health problem. The solution is not to cure the sick, but to transform the culture of welfare. No one who is ill should have a straightforward right to receive benefit."

This is the  agenda  that  was  adopted by former banker David Freud, advisor to the last government, now Parliamentary Under Secretary of State at the Department for Work and Pensions , which now underpins  the Coalitions proposals to “reform” DLA

The Coalition  maintains that  the "only" way to save money is to slash welfare spending. Effectively as many DLA claimants as possible must be bumped off benefits.

To prepare the ground, the disabled have been thoroughly demonized; labelled even by the Prime Minister as "scroungers”. The  need to reduce " welfare dependency" is shouted out , as loud as possible, to all who can hear.

The experience of people with ME , who have suffered for decades  under the psychosocial domination  of the corporate medical insurance industry ,offers a stark insight into the smoke and mirrors that passes for "21st Century " disability policy :

Smoke & Mirrors in ME

Smoke & Mirrors in PIP

Change the Name : ME to CFS Change the Criteria : Virus to Fatigue Simplify the criteria: So that ME is diluted down and is lost in an irrelevance  of Fatigue and mental health jargon In truth ME is physically complex and needs detailed understanding. Change the Focus : Biomedical to Psychiatric Move the Definition : To incorporate people with mental health need. Create a skewed approach : Based solely upon a limited psychosocial view of ME Create Systems to sustain the flawed Ideology : There are vested interests behind ME policy development , the medical insurance industry, who have  a massive financial stake in denying the physical reality of ME, either covertly or overtly Set up psychosocial clinics that focus purely on mental health strategies and deny the physical reality of ME, staffed by workers who believe that ME is not a physical disease. Ignore genuine need by switching the focus and making the person's reality irrelevant: Do not look  at ME within the  context of  a physical, untreated disease. In ME switch the focus  from the real issue of illness, to rehabilitation and away from the physical needs of the person. The outcome is a denial of people's reality, the misapplication of Cognitive Behaviour Therapy  and the channelling of resources away from where they are needed. The present reality of ME : ME is treated as if it is a mental health issue. The person with ME is subtly blamed for being ill and not doing enough to get better Their physical health is denied. Their  level of disability is denied Their needs go unmet and people with genuine ME are neglected unseen and left without appropriate medical support leading to a never-ending life of illness and disability, unsupported by the social and medical systems that should be in place to help them. Meantime the government  continues to wrongly  bank role the psychosocial approach to ME .

Change the Name : DLA to PIP Change the Criteria : What you “can’t do” , to what you “can do” Simplify the criteria: So that disability is watered-down and  the complexity of disability gets  lost in irrelevance. In truth disability is complex and needs detailed understanding Change the Focus : Disability to Ability Move the Definition : To exclude the least disabled and possibly  the most disabled,who cannot achieve independence, or those in residential care, from getting Benefit. Create a skewed approach : Based solely upon a limited social view of disability, ignoring the medical and environmental aspects. Create Systems to sustain the flawed Ideology : There are vested interests behind DLA policy development , using a private company  who have a massive  financial stake in denying the physical reality  of disability, either covertly or overtly. Set up a flawed Consultation Process, after already drafting the Bill to change  DLA. Set up ATOS with a financial incentive to remove people from benefits . Ignore genuine need by switching the focus and making the person's reality irrelevant: Do not look  at the impact of disability upon ability. In PIP switch  the focus from the real issue of disability to an out of context ability. The outcome is a denial of people's reality, the potential misapplication of Cognitive Behaviour Therapy and the channelling of resources away from where they are needed. The potential dangers of PIP : The danger of looking at ability and denying physical disability is that people may be viewed , like people with ME : as not trying hard enough as being more capable than they are as having a false “perception” of disability of wanting to be disabled of not needing the help they actually do need There is a danger of people with a disability  being “recommended” for cognitive behaviour therapy. There is a danger of a growing mental health view of physical illness and physical disability.

Greg Crowhurst

Stonebird 14^th February 2011

(permission to repost)

References :

Melissa Viney, Bending the Rules, Guardian , October 28 2010 http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits

Broken of Britain https://docs.google.com/document/d/1t8YmKuEbtT7kckSXymklHXX2pRg21-gsZMxMh4k1JaY/edit?hl=en&authkey=CPCbgukF#

Peter Hain, Labour & the Sick Note, New Statesman, 27 Nov 2007 http://www.newstatesman.com/politics/2007/11/work-benefit-welfare-tories

Jonathan Rutherford, E pluribus Unum, The Guardian 17 March 2008 http://www.guardian.co.uk/commentisfree/2008/mar/17/epluribusunum