ME Association response to Welfare Reform Green Paper

October 21, 2008

Department for Work and Pensions Green Paper: No one written off: Reforming welfare to reward responsibility

Around 2.7 million people currently claim Incapacity Benefit (ICB).  The benefit is paid to people who are judged to be incapable of work, initially by a GP and then at a later date by a Benefits Agency doctor.

The government believes that the 2.7 million figure is far too high and is determined to make a significant reduction in numbers – possibly in the region of 1 million claimants.


The aim is to do this through a combination of ‘carrot and stick' measures.


One such measure will be the use of cognitive behaviour therapy (CBT) in an attempt to significantly reduce the number of claimants with mental health problems.  The GP sick note system is also likely to be overhauled in 2009 with GPs playing a much more active role in return to work initiatives by informing potential employers of tasks that a patient is fit to perform. But the most important initiative is a radical change to the benefits system.  In future, this will focus on what sick and disabled people are, in theory, able to do in the workplace – rather than what they cannot do.  In other words assessing ability rather than disability.


The ME Association accepts that looking at abilities (as well as disabilities) is an admirable aim when it comes to deciding on whether someone may be able to return to the workplace.  We also accept that there was some justification in the government's argument that there were people claiming ICB who should not be doing so, and that from an historical perspective placing people on ICB has been a way of reducing the politically sensitive number of people who are classified as being unemployed.


However, while these political aspects and problems are relevant to everyone claiming benefits, people with ME/CFS often face additional hurdles.  For example, they may well find that they are being refused ICB, or find that existing claims are being terminated, due to a lack of understanding of the illness or scepticism/hostility about the very existence of ME/CFS by individuals who administer the benefit system.


ME/CFS is an illness that often starts in people in the age range early twenties to early forties – so many people with newly diagnosed ME/CFS are in employment.  At the start of their illness they are often very unwell and require a prolonged period – months rather than weeks – of sick leave from work.  Around 25% will become and remain severely affected – housebound or often bed bound.  A larger group tend to stabilise over the course of time, often with a fluctuating pattern involving periods of relative remission and relapse.  The number of people with ME/CFS making a complete or almost complete recovery is small – probably around 10%.


So while a large proportion of people with ME/CFS will remain incapable of returning to any form of meaningful paid employment there are others who, despite a combination of on-going ill health and disability, may after a period of time be in a position where they wish to attempt to return to some form of flexible, part-time employment that is also likely to be less demanding than they were previously used to.


For those who are incapable of work, far too many already find that their applications for ICB are being refused, or existing applications are terminated – due to the lack of recognition of the resulting disability.


And for those who may be able to attempt some form of return to work, the current inflexible criteria governing ICB does not cope with the sort of problems facing anyone who is both disabled and experiences on-going ill health that is variable and unpredictable.


Consequently, people with ME/CFS are not only concerned about the way in which ICB currently applies to their illness; they are also very worried about the proposal to change to a new type of benefit which is clearly designed to produce a significant reduction in those claiming long term sickness benefits.  Furthermore, they do not believe that the proposals address the specific problems they face and could easily make a bad situation even worse.


In October 2008, ICB will be replaced by the new benefit: the employment support allowance (ESA).  The change will apply to new claimants – those currently claiming ICB will initially remain on this benefit and be phased onto ESA over the next five years..


Our understanding is that the new ESA will be a two tier system in which all successful claimants will be entitled to a basic benefit paid at the same rate as the job seeker's allowance.  Those who are found to be unable to work on a new ‘medical capability' test will receive a higher rate of benefit – an employment  support allowance – that is similar to ICB with no conditions.  Those who are deemed "sick but able to work" will receive an employment support allowance component – but only if they participate in a government initiative such as Pathways to Work.


The MEA agrees with others who have already concluded that the separation of people with health based claims into those considered sick but able to work (who will receive lower levels of benefit unless they participate in compulsory employment programmes) and those considered to have a more severe/genuine illness or disability (who will receive a higher rate of unconditional benefit) will in effect create two categories of claimants: the "undeserving poor" and the "deserving poor"..  And we fear that people with conditions such as ME/CFS will generally find themselves in the "undeserving poor" category and having to participate in employment programmes that may not recognise their disabilities and so cause a worsening of their health.


If the Government is really serious about trying to help people with conditions like ME/CFS back into some form of meaningful paid employment it will have to address:


1. the issue of how people with fluctuating and variable levels of ill health and disability should be medically assessed and helped back into work.


2. ways in which the benefit system will have to be adjusted so that people who attempt to return to work with a flexible and erratic pattern of attendance are not penalised financially and administratively, either whilst at work, or if they fail and then have to go back to relying on benefits


3. ways in which employers – who often have a negative image of people with disabilities – can be persuaded to accept employees back into work whose attendance may well have to be flexible and unpredictable.


4. the proper training of civil servants , medical examiners and administrators about the nature of ME/CFS, the degrees of severity and the specific problems it creates in relation to employment.


5. the fact that no published scientific evidence is currently available to support the fairness, sensitivity and diagnostic accuracy of the new personal capacity tests and questionnaires that are designed to assess disability in relation to work.  


6. the urgent need to ensure that those who are genuinely unable to work with ME/CFS are able to obtain the long term sickness benefits that they should be entitled to without having to go to appeal.

The ME Association

21 October 2008


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