Letter to Professor Harrington re ESA groups and Fluctuating Conditions

CarerWatch submission to Professor Harrington

Dear Professor Harrington

CarerWatch is a group of unpaid family carers. We also have very many members with severe long-term illness or disability.

We are an e-mail based group, which allows people who are often isolated in their homes to communicate freely. All our policy is decided by the members. We e-mail an alert whenever we are coming to a position or view and all members are invited to come and join the discussion. We decide policy by consensus during the discussion.

Our members are very concerned about ESA. We have never experienced this degree of anxiety and concern before. So we are very grateful for the opportunity to submit this evidence.

We realise that your review is limited to WCA and in our opinion the problems with ESA are deeper than that. We don’t think the ESA groups meet the needs of people with severe long-term conditions. Because the regime in the WRAG contains sanctions and time limits copied from the JSA regime for fit people we think it is too coercive for people with severe disability. This means far more people need to be allocated to the Support Group.

We don’t think the groups are defined clearly.

Are you fit for the WRAG because you can manage some activity or is it because you are mentally fit to stand this level of pressure?

Rethink say in a  campaign –

Rethink Mental Illness is concerned that current benefit assessments fail to understand the reality of what it is really like to live with a mental illness. Further, 80% of people with a mental illness surveyed said the test has made their mental health worse.

After being assessed for Employment and Support Allowance, Ryan* told us –   

“As a direct result of the way I have been treated… I considered taking my own life on and off for a period of months. My GP even wrote a letter to them to spell out the severity of my illness and how the situation was putting me in danger.”

We have an opportunity to change the welfare system so that people like Ryan are treated fairly.

Rethink Campaigns Team

We agree with Rethink. The WRAG frightens people and is not a safe place for them to try and find work.

Our reservations are spelled out in more detail in a recent letter, which we sent to six charities, which is copied below.

We think that sanctions and time limits should be removed from the WRAG so that it is made a safe place to help people find work. Unless this happens the WCA descriptors must take account of the vulnerability of sick and disabled people to undue pressure and place most of them in the Support Group.

Frances Kelly

Letter to six charities from CarerWatch and the Broken of Britain

To – MS Society, ForwardME, Parkinson’s UK, Arthritis Care, National Aids Trust and Crohns and Colitis UK

CarerWatch and the Broken Of Britain are both online campaigning groups. Our members are family carers and people with various disabilities/serious illness.

We would like to congratulate you on your excellent report – ESA WCA Review – Making it Work for Fluctuating Conditions – 2011

In particular we would like to endorse your statement –

“Capability for work is not a clear cut issue. Although some people with long term conditions or disabilities can be completely fit for work or completely incapable of work many do not fit neatly in to either category. Those whose conditions fluctuate may move between the two extremes but more often will fall somewhere in the middle”.

All severe long-term conditions fluctuate to some degree. This statement applies to most people with severe long-term conditions. Most people with disability will never be fully fit for work – neither are they completely unfit for work.

This is the first time to our knowledge that this fundamental reality behind ESA has been so clearly identified.

We believe that this could provide a break through in solving the problems marring ESA. If it can be addressed then ESA can be transformed in to the supportive benefit it was designed to be.

Once it is accepted that most people with long-term conditions do fall squarely in the middle and will never be fully fit for work the solution is to design a group, which meets their needs. Unfortunately the WRAG in its current form with time limits, sanctions and mandatory work activity is not a safe place for people who will never be fully fit for work.

It is necessary to design a group which is a safe and supportive environment for people who will never be fully fit for work where they can attempt to work if they want to, without fear of losing benefits or being timed out.

What is the point of the time limit when people know they will not be better within a set period of time?

What is the point of sanctions when failure to comply may always be due to the condition?

How can you get people to agree to a program of activity when they will never be confident that they can fulfil the demands of a work program?

These coercive conditions frighten people and stress makes all conditions worse. They also frighten people in the Support Group in to abstaining from activity in case they are reallocated to the WRAG.

These threats in the WRAG have been designed by fit people and show no understanding of what it is like to try to find and keep work with a long-term disability. They have been taken en bloc from the program for fit people and they do not translate to the reality of disability. It is a tragedy that what started as a constructive and supportive program has become such a threat because of the unnecessary time limits and sanctions.

This one simple change – removing the time limits and sanctions from the WRAG – would make it a suitable group for most people with disability.

We would like to ask MS Society, ForwardME, Parkinsons UK, Arthritis Care, National Aids Trust and Crohns and Colitis UK if they have any news they could share with our members of any developments since the report was first published. Plus if any specific campaign is being planned.

We have shared this with many other individuals, groups, charities, and would welcome their comments too, along with details of any action being taken that our members would be able to support.

We look forward to hearing from you all.

Frances Kelly
Kaliya Franklin
Rosemary O’Neill

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10 Responses to “Letter to Professor Harrington re ESA groups and Fluctuating Conditions”

  1. malka Says:

    Excellent letters…………………..lets hope the tide is changing now, and common sense and compassion will be restored…………

  2. Kevin James Says:

    Dear Carer Watch,

    The September Results from the After Atos Assessment – online rolling feedback survey and rolling results for all those taking the Atos Assessment are now published on Facebook and are available in pdf if any would request one from afteratos@mail.com.

    These feedback results are free for anyone to use and share and back up any argument they may have and in trying to bring it forward to others.

    https://www.facebook.com/media/set/?set=a.167245760024662.42141.100002177166941

    After Atos would like to cover all aspect of diability including the carers and the DLA and Tribunal process. and with funding and more bodies would do. But as set up and run by one lone disabled person with some great degree of severe impairment, but provides a vital tool for people to record their experiences, facts and stats and a vital information resource for those looking for back up supportive evidence, and what better than from the disabled themselves.

    Good Luck with your letter.

    Prof Harrington’s review and concluding report is to take over years. After Atos Assessment takes and record the experience as it happens in rolling monthly feedback survey and results. How more relevant and instant is that? And by looking at our 6 month feedback the Atos WCA/ESA debacle needs to be stopped. NOW!! and a return to reason and sense.

    AA

  3. Kate Says:

    Thank you so much for this. This reflects exactly how I feel. There are so many people with fluctuating conditions. I have fibromyalgia and mental health conditions – others have ME, MS, Lupus, bipolar, schizophrenia, agoraphobia, depression and so on. I would like to be able to do a little bit of work that is tailored to suit my needs, but the threat of sanctions, being time-limited and coerced, is frankly scaring me to death and incapacitating me. Fear does that. I don’t want to be scared. I want to be supported. I have to know there is a financial safety net if I fail and have to start again or have time out.

  4. Anon Says:

    Welfare Reform Bill 2011

    On 16 February 2011 the Welfare Reform Bill was introduced to Parliament. The Bill legislates for the biggest change to the welfare system for over 60 years.

    It introduces a wide range of reforms that will deliver the commitment made in the Coalition Agreement and the Queen’s Speech to make the benefits and tax credits systems fairer and simpler by:

    creating the right incentives to get more people into work by ensuring work always pays
    protecting the most vulnerable in our society
    delivering fairness to those claiming benefit and to the taxpayer.

    The main elements of the Bill

    The main elements of the Bill are:

    the introduction of Universal Credit to provide a single streamlined benefit that will ensure work always pays
    a stronger approach to reducing fraud and error with tougher penalties for the most serious offences
    a new claimant commitment showing clearly what is expected of claimants while giving protection to those with the greatest needs
    reforms to Disability Living Allowance, through the introduction of the Personal Independence Payment to meet the needs of disabled people today
    creating a fairer approach to Housing Benefit to bring stability to the market and improve incentives to work
    driving out abuse of the Social Fund system by giving greater power to local authorities
    reforming Employment and Support Allowance to make the benefit fairer and to ensure that help goes to those with the greatest need
    changes to support a new system of child support which puts the interest of the child first.

    Welfare Reform Bill 2011 and supporting products (UK Parliament website)

    More information about the Welfare Reform Bill:

    Universal Credit briefing notes
    Personal Independence Payment briefing notes and draft regulations
    Proposed changes to Contribution-based Employment and Support Allowance – questions and answers (70KB) PDF
    Impact assessments and equality impact assessments

  5. Anon Says:

    http://www.dwp.gov.uk/policy/welfare-reform/legislation-and-key-documents/welfare-reform-bill-2011/index.shtml

  6. Kate Says:

    @Anon – what the Welfare Reform Bill proposes and what is in reality actually happening on the ground or going to happen aren’t marrying.

    1) It’s well-documented that the ‘most vulnerable in society’ aren’t protected, from terminally ill cancer patients, to people with mental health problems and those with fluctuating conditions

    2) Anyone who has read the Universal Credit impact assessments in detail will have read that it isn’t actually the case that ‘work will always pay’. In some cases, people will be worse off, including those who have child care costs and some single people

    3) The introduction of PIP to replace DLA is undoubtedly a cost-cutting exercise with a proposed target of 20% reduction by rebranding it while hiding behind statements such as ‘targeting those with the most needs’. The disabled community have seen right through this and know that what is really meant by this is – those disabled people with fewer needs can expect to have their benefits cut

    4) Creating a ‘fairer housing benefit’ approach is again a cost-cutting exercise and there is nothing fair about taking housing benefit away from people who have an extra room and forcing them to move if they cannot afford it

    5) Once again ESA has been widely panned by all sections of society. It isn’t fair, it doesn’t go to those with greatest need and assessments are carried out by a private firm ATOS who have been widely criticized for their computerised tick-box assessments, who are paid to get people off disability benefits, who are the sister organization of UNUM provident who have been found guilty of malpractise in the USA, and who are completely unaccountable

  7. Anon Says:

    Welfare reform bill: Peers hear of ‘terror’ and ‘anxiety’ over DLA plans

    Many “terrified” disabled people expect to lose their independence because of measures within the government’s welfare reform bill, disabled peers have told a Lords debate.

    Five disabled peers described the fear, anxiety and even terror expressed by disabled people about aspects of the bill, particularly proposals to replace disability living allowance (DLA) with a new personal independence payment (PIP).

    They were debating the bill for the first time, during its second reading in the Lords.

    Baroness [Jane] Campbell, the crossbench peer, said successive governments had provided financial support to enable disabled people to be equal citizens, which “lifted us from being passive recipients of care and welfare to independent people with life opportunities”.

    She said: “From my mailbag, it is obvious that many disabled people expect to lose their independence. Do the government believe that returning disabled people to levels of dependence last seen 30 years ago makes good economic sense?”

    She said it was “obvious from the PIP proposals so far that the government know very little about independent living”.

    And she said the government appeared to have abandoned the method of “co-producing” reform with disabled people’s organisations, returning instead to “old forms of consultation, merely inviting contributions from such organisations rather than working together”.

    The Liberal Democrat peer Baroness [Celia] Thomas said the government’s pledge that PIP would be “better targeted” than DLA was “more than a bit chilling” and “smacks of having a rather crude pecking order of disability, which could mean that people who genuinely need the benefit will be excluded”.

    The Labour peer Baroness [Rosalie] Wilkins said: “DLA is a complex benefit because disability is hugely complex and any reform needs to be done with great awareness of that complexity if it is not to leave disabled people more deprived and impoverished, denying millions the hope of living the independent lives that we have come to expect.”

    She said she believed disabled people had “every reason to fear this bill”, as they would bear a “disproportionate amount of the cuts”, while the government was proposing no “mitigating action”.

    She said she hoped peers could take such action to improve the bill during its committee stage.

    Baroness [Tanni] Grey-Thompson said she and many other peers had been contacted by disabled people who were “terrified” that the bill was the “first step towards an insurance-based, perhaps Americanised system which will further discriminate against those in need”.

    She said: “Will the minister assure us that all disabled people will continue to get the support that they need to live equal lives? Can I have his assurance that we are not dooming a generation of disabled people to a life of hardship?

    “Does he consider that I have disability-related costs? People like me are afraid that we will lose vital allowances. Will we?”
    Lord [Colin] Low, the crossbench peer, said the most “flagrant” example of the government penalising those not in work was the proposal to limit to just one year the period of time claimants in the work-related activity group could claim the “contributory” form of employment and support allowance (ESA), the new out-of-work disability benefit.

    It is estimated that 280,000 disabled people would lose their entire ESA, currently worth up to £94.25 a week, which he said was “a breach of faith”.

    But Lord Freud, the Conservative welfare reform minister, claimed that a simplified welfare system would increase take-up of benefits, “potentially lifting 600,000 adults and 350,000 children out of poverty”, while the “combined effects of welfare reform could mean up to 300,000 fewer workless households”.

    He insisted that the government was “committed to supporting disabled people to exercise choice and control and to lead independent lives”, and that PIP would “focus support on those individuals who experience the greatest barriers to remaining independent and leading full, active and independent lives”.

    He said time-limiting contributory ESA to one year “strikes the right balance between the need to restrict access to contributory benefits for those under pension age while allowing those with longer-term illnesses to adjust to their health condition”.

    http://www.dls.org.uk/Rights/News/2011/september/7.html

  8. Anon Says:

    My posts are to provide alternative information, it is not that of my personnel view and to incorporate other news items relative to the topic.

    Further information I found lists:

    http://www.nat.org.uk/News-and-Media/Press-Releases/2011/September/Fluctuating%20symptoms%20of%20HIV%20Report.aspx
    NAT consultation responses http://www.nat.org.uk/News-and-Media/Consultation-Responses.aspx
    THT consultation responses http://www.tht.org.uk/informationresources/policy/governmentconsultations/

    If we are to look at the UK ILF £333million pounds to support 20,500 people, yet 735,000 are in receipt of High Care DLA, this is an inequilities issue and on average funding of £50K per year is received.

  9. Must read news on Hardest Hit march/event. 22nd of October. « Launchpad: By and for mental health service users Says:

    […] of this, particularly benefits and the (in)famous Work Capability Assessment administered by atos: A carer point of view The terminally ill being told their benefits may […]

  10. Welfare conditionality and disabled people: a democratic deficit | Inequalities Says:

    […] is the point of sanctions when failure to comply may always be due to the condition?….These…..have been designed by fit people and show no understanding of what it is like to try to fi…“ (Carer Watch’s Blog: Letter to Professor […]

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