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Stop press: charities left reeling by your response
14 August 2009

17,000 sick and disabled campaigners have managed in just a few days to send shock waves throughout the voluntary sector. Charities have been left reeling by the flood of emails they have been deluged with and the Disability Benefits Consortium have now issued a statement in the hope of stemming it.

Many hundreds of you have sent us copies of replies you have received from a huge range of charities. We have also heard from charities who say they cannot cope with the number of emails they are receiving.

Whilst some had already begun working on a reply to the green paper, it’s clear that many other organisations were hardly aware of it or its potential implications and are now hurriedly formulating responses. Some have begun canvassing their members. Others are seeking clarification from government over the exact meaning of the phrase ‘disability benefits, for example attendance allowance’

CPAG claim that they have had an assurance from the DWP that DLA will not be involved in any reforms. However, few disabled campaigners are likely to be satisfied with a private assurance from unnamed officials rather than a government minister. And that still leaves the issue of AA unresolved.

Meanwhile we received this communication from the Disability Benefits Consortium today which they asked us to communicate to campaigners:

“The Disability Benefits Consortium (DBC) comprises more than 25 national organisations that represent the needs of people who rely on disability benefits. As a consortium, we strongly oppose any proposals for using existing benefits to fund social care, and we will be making our opposition clear in our forthcoming response to the Green Paper on social care in England."

It is a very important step forward – there will now be organised opposition from a consortium of agencies that the government would have very much hoped to keep onside – or at least reasonably quiet, at this very early stage in the legislative process.

It’s certainly a very different response from the one we were getting from some charities at the beginning of the week, which dismissed any possibility of DLA being at risk and seemed to lack any sense of urgency in relation to the threat to disability benefits generally. Your success in getting the disability benefits consortium onside may make them think again.

There may be little purpose in continuing to bombard members of the consortium with emails which are now unlikely to be read and are generally being replied to with a standard response email. There is no doubt that the message has got home that enough is enough and there should be no more attacks on sick and disabled people’s income.

In another sign that campaigners are causing a stir we have discovered that home office officials are apparently attempting to discredit the campaign. Emails appear to be being forwarded from the Performance and Finance Directorate of the Home Office which, bizarrely, claim that the campaign is part of an identity theft scam. We are currently making further enquiries of the named home office staff. We have also been made aware of claims being circulated that we have inserted a virus in copies of the green paper!

Your efforts have achieved a startling amount in just a few days - more than we had expected would be achieved in many weeks. Dealing with the green paper has now leapt to the top of the agenda and it would be a foolhardy disability charity which dismissed the issue as a minor one, or at too early a stage to be concerned about.

Charities have until 13 November to make their representations to government. They now know that they will be watched and judged on the content of those representations– all of which should be obtainable under the Freedom of information Act - by many thousands of their own members. What we hope to see now is that those charities which are not already doing so will involve their members in creating the content of those responses. Where they approach you for input and support, we have no doubt that you will be happy to help them. Hopefully, that way we can avoid a repeat of the failure to prevent the disastrous impact of employment and support allowance.

We’ll be sending out another email on Tuesday suggesting further action. Meanwhile, well done!

Closing the gate after the horse has bolted

For what it is worth..as in any relevance of putting it up here..I am putting up the response I got from 'Disability Alliance'.

Before I post the letter, I have to say that I didn't realise it was so late in the day. I thought the Green Paper (including cuts to DLA) was in the consultation process. However, it seems it is going to the House of Lords in October (for rubber stamping). Some tweeking could take place before that..maybe I am looking from a worse case scenario perspective but I can't see any major turnarounds now.

Shame that those of us, and organisations who supposedly represent us, who would have liked to have had a say haven't been provided with that opportunity in any real-time, to do so. Such is life..and I reckon things are only going to get worse. Bleak House here we come!!!

Additional note: I had completed the survey (identified in letter below). If nothing else, you can see where certain hierarchical thinking is. From what I read...it would appear... we are heading towards a de-nationalised health service. That may sound appealing but beware it could well be replaced with a newly nationalised (with a fancy title) and downsized something else.

Dear Ms Lawrence

Disability Alliance supports disability living allowance (DLA) and attendance allowance (AA) - as national, non-means tested benefits paid to disabled people to meet their higher living costs. We - and others - are well aware of the evidence on the higher costs of living disabled people experience. DLA and AA were intended to help with those costs and help tackle the link between disability and poverty. We believe placing either or both of these funds in the pool for Local Authority distribution could cut support and restrict choice and control for many disabled people.

Our position is online - http://www.disabilityalliance.org/care6a.htm - and we are running a survey to encourage people to respond to the green paper titled 'Shaping the Future of Care Together' and help strengthen our response by telling us your views. Please fill it in if you have time at: http://www.disabilityalliance.org/care6.htm The questions are those posed in the green paper - we need people's answers to these, but we have also added a couple of our own. We look forward to reading your response.

It would help in our campaign work if you also write to your MP describing your experience. If you don't know who your MP is you can find out (by using your postcode) at http://findyourmp.parliament.uk/ Attached is a sample letter that you might like to consider sending to your MP.

It would also help if you wrote to the Department for Work and Pensions on this issue - but please highlight that you are contacting them about national policy and not your individual case, or they may refer you to another agency. You can find the e-mail address for DWP Ministers on the following webpage at http://dwp.gov.uk/contact-us/

Disability Alliance works and campaigns at the national level to influence Government plans in this area. We are members of the Disability Benefit Consortium, and our website hosts the DBC at http://www.disabilityalliance.org/dbc.htm We meet regularly with the Department for Work and Pensions and HM Revenue and Customs on a range of benefits related issues.

Thank you for your e-mail.

Yours sincerely
Michele Holland


Disability Alliance
Universal House, 88-94 Wentworth Street
London E1 7SA
Tel: 020 7247 8776
Registered charity number 1063115
Company limited by guarantee number 2056801
www.disabilityalliance.org
Breaking the link between poverty and disability

Cutty Outty Bits ...now that's what I call therapy

Changes to DLA and other Allowances - Stakeholder Group Members

Here is a list of the Stakeholder Members and their email addresses(note there is no representative from mental health charities bar Alzheimer's society):

Age Concern - Helena Herklots – grants.unit@ace.org.uk
Allied Health Professions Federation – infor@ahpf.org.uk
Alzheimer’s Society - enquiries@alzheimers.org.uk
Association of British Insurers - Nick Kirwan – contact form
Association of Directors of Adult Social Services - John Dixon - john.dixon@westsussex.gov.uk
Asthma UK - Neil Churchill - info@asthma.org.uk
Better Government for Older People - susan.price@londoncouncils.gov.uk (this is the best I could do, BGOP don’t seem to have a website, just contacts for different areas)

British Association of Social Workers - Ian Johnston - nothing for I.J. - h.dawson@basw.co.uk (chief exec.) j.devo@basw.co.uk (magazine)
Carers UK - Imelda Redmond - info@carersuk.org
Commission for Social Care Inspection - Paul Snell enquiries@cqc.org.uk (Now Care Quality Commission)
Confederation of British Industry – Nigel.Bourne@cbi.org.uk (very difficult to find, this is director CBI London)
Counsel and Care - Anna Passingham – anna.passingham@counselandcare.org.uk
Crossroads Association - Anne Roberts – contact form
Disability Alliance - Kate Nash - office.da@dial.pipex.com
English Community Care Association - Martin Green - maria.patterson@ecca.org.uk
Equality 2025 - Rowen Jade – No website
Equality and Human Rights Commission - Gerry Zarb - info@equalityhumanrights.com - (England)
General Social Care Council - Mike Wardle - info@gscc.org.uk
GMB - Sharon Holder - info@gmb.org.uk
Help the Aged - Elizabeth McLennan - info@helptheaged.org.uk
In Control - Simon Duffy - admin@in-control.org.uk (S.D. has left)
Independent Age - Janet Morrison - jeffrey.manton@independentage.org.uk (London)
Institute of Public Policy Research - Sophie Moullin - k.osullivan@ippr.org (Press releases, no others)
Joseph Rowntree Foundation - Sue Collins - info@jrf.org.uk
The King's Fund - Richard Humphries - Tel: 020 7307 2400 (No email)
Local Government Association - Anne McDonald - anne.mcdonald@lga.gov.uk
London School of Economics - Prof Julien Forder - disability-dyslexia@lse.ac.uk (For disabled students) pressoffice@lse.ac.uk
Long Term Conditions Alliance - Mark Platt – (No website but it was on this site, it’s about health and social care) info@nationalvoices.org.uk
Look Ahead Housing and Care Ltd - Victoria Stark - info@lookahead.org.uk
Mencap - David Congdon - Sandra.pick@mencap.org.uk
National Care Association - info@nca.gb.com
National Care Forum - Des Kelly - des.kelly@nationalcareforum.org.uk
National Centre for Independent Living - Sue Bott - info@ncil.org.uk
National Housing Federation - Rebecca Pritchard - rebeccap@housing.org.uk
NAVCA - navca@navca.org.uk
New Local Government Network - info@nlgn.org.uk
NHS Confederation - Jo Webber - enquiries@nhsconfed.org
Partnership Group - Ian Owen - info@partnership.co.uk
Princess Royal Trust for Carers - Alex Fox - pknight@carers.org
PRP Architects - lon.prp@prparchitects.co.uk (This is the London Branch or use contact form main office)
Race Equality Foundation - ratna@racefound.org.uk
RADAR - Beth Capper - radar@radar.org.uk
Registered Nursing Home Association - Ian Turner - email: info@rnha.co.uk
Relatives & Residents Association - Dr Gillian Dalley - Gillian.Dalley@relres.org
Royal College of Nursing - Howard Catton – Contact form
Skills for Care - Andrea Rowe – Contact form
Social Care Institute for Excellence - Julie Jones - info@scie.org.uk
Social Enterprise Coalition - Jonathan Bland - info@socialenterprise.org.uk
Social Security Advisory Committee - ssac@dwp.gsi.gov.uk
Standing Commission on Carers - scoc@dh.gsi.gov.uk
UK Disabled People’s Council - Julie Newman – (No website, couldn’t find contact)
UK Home Care Association - Lesley Rimmer - helpline@ukhca.co.uk
Unison - direct@unison.co.uk
University of Essex Professor - Richard Berthoud - berthoud@essex.ac.uk
Voluntary Organisations Disability Group - Bryan Dutton - info@vodg.org.uk
Volunteering England - Sheila Hawkins - volunteering@volunteeringengland.org

I have emailed Kate Nash (who is one of the few representatives on the group who I think can represent (in part) those with mental illness. I do urge people to write to anyone they know with any say, power or connections asking them to defend the rights of disabled people to continue to have DLA payments,particularly as I believe that if the money is given directly to social services, people with mental illness will get little,if any, support from them in meeting their care needs.

My recent experience of them with my father is that they do the barest minimum and then discharge people as quickly as possible.

Cuts in Disability Living Allowances..another kick in the jacksie for disabled people and MH charities don't give a shit!!!

From benefits and work website:

A government green paper has revealed plans to stop paying disability benefits and hand the cash over to social services instead.

The Shaping the Future of Care Green Paper published by the DWP and the Department of Health on 14th July sets out government plans to get rid of attendance allowance and, depending on public reaction, also leaves the way clear to end the care component of DLA.

The consultation period for the green paper ends on 13 November. If there has been no significant outcry against the plans by then, it seems very likely that whichever party is in power after the next election will seize this opportunity to cut public spending by over a billion pounds a year.

Unfortunately, so far, that outcry has been very muted indeed, with only a few agencies – including RNIB and Age Concern and Help the Aged - speaking out. Shamefully, at least one major disability organisation, Disability Alliance, immediately announced its support for the green paper’s proposals.

This is in spite of the fact that a report in November 2008 by the Institute for Social and Economic Research warned that taking DLA and AA from claimants and making it part of a ‘personal budget’ administered by social services will leave millions of disabled people worse off and with less independence.

The lack of protest is caused at least in part by ministers deliberately choosing ambiguous terms for their plans. The green paper refers only to cutting ‘disability benefits, for example Attendance Allowance’. Some organisations with predominantly younger members clearly believe that because DLA isn’t specifically named, that therefore it isn’t in the firing line.

But they are forgetting all the deception and weasel words that have surrounded the introduction of employment and support allowance. For example, ministers said that ESA would be paid at a higher rate than incapacity benefit. In fact, it turned out that cuts in related premiums mean that many people are very much worse off on ESA than they would have been on incapacity benefits.

The reality is that if the government was intending to axe only AA it would have said so clearly, instead of deliberately and repeatedly using the term ‘disability benefits’ to cause uncertainty and confusion. Writing on Rightsnet, Neil Bateman, a respected welfare benefits consultant who also writes for Community Care magazine argued:

“Based on what I heard last week at the DWP Policy and Strategy Forum, both DLA and AA are in the DH's [Department of Health’s] sights and DWP are closely, involved in these developments.”

Even Paul Treloar, until recently Disability Alliance’s Director of Policy and now Head of Information at Gingerbread, wrote that:

“From what I understand at the moment, it is certainly attendance allowance that is being considered for the chop and reallocation to means-tested social care provision via local authorities - but given that the ultimate aim is to come up with a comprehensive and sustainable system of social care for all ages, it's difficult to see how DLA care component won't be similarly up for inclusion, in my opinion.”


Here at Benefits and Work, we’re convinced that the threat to DLA as well as AA is very real and the that time to act is short.

As a result, we’re launching our own campaign to save these vital benefits. We’re looking for one thousand people to sign up for our No More Benefits Cuts campaign. All you need to do is provide us with your email address and first name and be prepared to give up a few minutes of your time once a week to send an email or post on a forum.

Although we know it’s a very tough target, we won’t begin until we can get 1,000 people to sign up for the campaign, simply because we don’t believe that a smaller number will have any effect at all. In truth, many more will eventually be needed.

You don’t need to be a claimant – you might be a carer or support worker, for example – and you don’t need to be a subscribing member of Benefits and Work. You also don’t have to send any emails if you choose not to and you can remove yourself from the list at any time you wish. And, of course, we will never pass your details on to anyone else under any circumstances.

On the other hand, if you think that here at Benefits and Work we’re just being doom and gloom mongers and that only attendance allowance is really under threat then please consider this:

If we let them get away with this, if we all look the other way as one and a half million sick and disabled pensioners have their attendance allowance stolen from them and are plunged into deepest poverty, how long do you honestly think it will be before the government comes back to steal your benefits as well?

And who will you ask to speak out for you in the future, if you remain silent now, just because you don’t think this affects you?

If you wish to sign up to the campaign to try and prevent allowances being withdrawn go to:

http://www.benefitsandwork.co.uk/disability-living-allowance-(dla)/dla-aa-cut

The site has been accused of cajoling people in to paying a joining fee but I think that is a bit iffy for people who are on low incomes. I signed up for the campaign and received an email about it made no mention of a joining fee...only what people can and are doing to try and stop Disability Living Allowance being taken away from those who need it.

SHAME ON MIND AND RETHINK FOR NOT SPEAKING OUT ABOUT THIS OR CAMPAIGNING PROPERLY FOR THE MENTALLY ILL!

The good, bad, ugly and a bit daft

Let's start with combining the bad and the ugly

Was yakky morning (weird combos of naff physical feelings and emotional torments) not improved by phone calls from 'officialdom'. Seems the advocacy service have been kept out to the picture in regards to what is happening with Dad. Updated his advocate and passed on details of relevant others she needs to talk with..whilst making it clear that I am not here to play a co-ordinating function nor to take responsibility for Dad's care. She asked if I would I rather she took over the linking role and I said "Yes, please". All I really need to know is what decisions are made and to have a say when it comes to decisions that I believe will have an impact on Dad's long term care and my well being.

Straight after, the person who is covering for the Director, in his absense, rang to ask me how things were. I told her I was feeling pants (migraine brewing) and that I had nothing much more to say because I hadn't seen Dad since Wednesday and had passed feedback from that to the Director. I think she was just touching base and that is fair enough but I am beyond tired of phone calls and particularly ones reminding me of things that I am struggling to handle.

Is going to be another case of taking phone out of socket and letting things be what they will.

Having self medicated to level of tolerating life, dragged sorry butt round to shops to pick up latest zoo photos. Derby trip ones are still being developed in some lab. Yep, it's baby elephant time. I treated myself to some marshmallows whilst out to go with hot choccies. That had to be done.

And so to the good. For me, it doesn't get much better than this:

Baby Needs Walkies



Baby Tired Now



She still hasn't got a name but news is that Mum (Kaylee) and baby are still doing well.

Here is the start, hopefully, of greater things. Whilst in Derbyshire sussed that bees absolutely love Lavender as they were to be found, every morning, swarming round the lavender in the garden. Trip to garden centre planned soon as rain eases up.




Ending on the daft. Here are my beloved tarten Converse. 3 years old and still hanging together although they have seen better days. Ha!

If I hadn't have laughed

I would have bawled me eyes out.

Went to visit Dad in the 'improved' local acute unit. The manager, in a conversation earlier in the day, said I would find positive changes in the place. Hmmmm...

I tried....I really did.... to spot the positive changes but they weren't there. I saw lots of signs such as 'The West Wing'. I was neither thrilled or upset by those but the initial approach on arriving there of 15 feet wire fences and barriers started to give me the heebies. I had to remind myself that I wasn't entering a high secure unit.

Dr J and I were informed on arrival that we had to sign in. Fair enough but when I asked to borrow a pen, the receptionist looked at me like I was a piece of shit. I think that goes with the job!!

We were then ushered into a side room and asked to wait for Dad. It was a pretty humid day and it felt like being in a sauna.

Dad was ushered in. For the love of all things sacred, I nearly wept. He was even more debilitated than I imaged. I can't explain it properly and won't attempt to. I grabbed Dr J's hand and rallied best as. We did manage to get through his mail (which he had asked me to bring from home) but he seemed disorientated and distracted. He kept asking for a tonic to pick him up. If only it was that simple. he wouldn't be in that place.

I kept thinking I was going to faint. I was sweating profusely and whereas Dad's blood pressure (which the nurse took 3 times due to him saying he felt so weak) seemed dangeroulsy low to me, I felt mine go through the ceiling.

There were communication issues (understatement)...the staff nurse had a strong African accent and my father is very hard of hearing. I ended up playing intepreter. When the option of PRN came up...I had to explain to Dad what PRN meant and the nurse asked me if Dad had a hearing problem. Er yes and no he wasn't just being rude or evasive. At one point Dad got aggi and started pacing but then got dizzy so I held him and sat him back down.

Due to heat in room and Dad getting aggi, I suggested we go into the garden area to get some fresh air. I asked the nurse and was told that Dad could go but visitors were not allowed. For fekk sake. Since when did units become even more like prisons? My last stay in there is a memory I could do without but even back then visitors were allowed to sit with me in the garden. I guess is another one of those essential Health and Safety measures. Although not sure essential to whom.

I made a joke about Colditz being more accommodating and mimicked a duck walk...I had this image of staff in Natzi uniforms and I laughted (maybe a bit too hysterically) but it was either that or kick off.

All I knew was I had to get the hell out of there. So Dr J and me said our goodbyes. I gave Dad a hug and said I would ring him and be back at the weekend. Am hoping by then I am less spooked by the thought of going there again. Outside I was shaking. Both Dr J and me have too many bad experiences and that visit did nothing to change my mind about mental health services and how inappropriate the so called modernisation programme is for the mentally ill.

It seems to revolve around risk assessing anything therapeutic or human out of these places and demoting people with illness to 'dangerous animals' that must be contained. Now I fully appreciate that Dad is in no fit state to be allowed to roam around freely. If his illness isn't to be trusted (and right now it can't be) then the affects the medication are having on him are equally limiting his capacity to function. Yeah! Maybe the meds will work. MAYBE!!!! Even if they do...it is very early days and very early days on strong meds (his being Dipixol) are ones in which he needs alot of monitoring (for physical reactions) and support due to debilitation.

After a rather fraught couple of days, on my arrival back home....I have been reassured that Dad is not due home leave. I won't go into details but I was led to believe he was being sent out Weds (yesterday). That beggared belief really but after frantic phone calls to the Director... for sure, for now, he is not going anywhere and is better off there. That is saying something because, and I mean this, I would rather be dead than have to go back there again.

I am not sure now that I made the right decision....but what else could I do? Let him die? Perhaps that would have been a merciful release. I can't tell and I only hope that Dad gets through this and to a point where it isn't total torture for him to be alive and constant mind fuck for me.

Last night I spoke to Dr J about moving. Is a pipe dream at the moment but at some point I would like to move away from this place and the area. Way too many bad memories. I am not sure that Dr J would come with me and I am not sure that if he did it would benefit either of us but is a dream I am going to hang on to. Sometimes the dream of a better future is all that there is to hang on to.