The Call From Ed Miliband

After a question about the treatment of disabled people feisty enough to bring a wry smile to the face of seasoned political commentator Peter Snow at the recent Labour conference, yesterday, the Labour leader Ed Miliband honoured his public promise to discuss the issues facing sick and disabled people further.

Sue Marsh and myself spent a day spent carefully planning what to say and what we might be able to acheive from this conversation; the pressure was on. We knew that at most the conversation would be scheduled for around 10 minutes and that there was a huge expectation for answers from sick and/or disabled people. We needed two clear objectives we thought we might be able to suceed with in that space of time so we decided to concentrate on the way sick and/or disabled people are being spoken about by politicians and the consequences this has for our lives. We also decided to focus on the particular issues with the Work Capability Assessment as that is affecting so many people already. It was difficult to narrow it down to just two issues but we wanted to be able to acheive measurable results from this phone call and decided these were the initial priority in getting Labour to listen to us.

The first thing Ed had to say when he phoned was an apology for calling me Harriet in the conference hall. Then he said he was ready to listen and to his credit, listen is exactly what he did. I must have done 90% of the talking, with Ed asking questions to clarify. We talked in some depth about the damage the scrounger rhetoric, used by New Labour as well as the Coalition government, is doing to sick and/or disabled people. I was able to explain that disability hate crime has risen sharply and that as sick or disabled people we see a direct correlation between that and the scrounger label. Ed explained that he has concerns around worklessness and disincentives in the benefits system but that he understands now the need to separate out sick or disabled people from discussions about worklessness and welfare dependency.

We also talked about some of the problems with the Work Capability Assessment, acknowledging that the original idea to support disabled people into work was well intentioned but not working in practice. Ed asked for clarification about what was happening, and what we thought the most pressing issues were. I was able to explain that although there are all sorts of issues surrounding the competence of Atos who carry out the assessments, the real problems are being caused by the change in the descriptors intended to ensure less people qualify for the benefits. We discussed how inappropriate it is for sanctions or conditionality to be used against people in the Work Related Activity Group, all of whom have been recognised to be sick or disabled and I was able to explain to Ed how impossible it is, particularly for people with fluctuating conditions to engage with the work programmes as they are currently set up. We also covered the problem of people with long term health conditions being found 'fit for work' and put onto Job Seekers Allowance where they are not able to access the more specialist work support intended for them via the Work Related Activity Group.

We also talked about how for sick and/or disabled people it feels like we are round pegs being forced into square holes, and that for as long as that continues to happen we will fall straight through the holes in the system. I emphasised that sick and disabled people need unconditional support when we can work and for those of us who feel able to participate it isn't that we don't want to work or contribute, but unless we are able to do so on our terms we won't be able to acheive that. For many people contributing to the world of work financially simply isn't possible, but that does not mean they are not contributing to society. We talked about how inaccessible the country still is to us, despite laws surrounding access and that not being able to get onto public transport or into businesses means yet another barrier for people who might want to work. I was able to explain that unless the world of business is ready to offer more flexible working options, part time, from home, small amounts of hours etc any of these work programmes will fail, not because disabled people are lazy or work shy, but because we have to do things in a different way to the 'normal' working week and world. 

Ed promised to set up a meeting between Broken of Britain activists and the new shadow minister for disability Anne McGuire. He also promised that he and Liam Byrne will meet with us all after intial meetings with Anne. We would like to thank Ed Miliband for honouring his promise to speak to us in more depth about these issues, for listening to our views and for making a committment to improving the way Labour speak about sick people, disabled people and worklessness to be clear that we are NOT scroungers.


We could possibly speculate as to the connection between this conversation and the press release late yesterday evening from Anne McGuire, but we welcome this as a hugely positive first step on the long road to improving the Labour party's perception and treatment of people who are sick and/or disabled. 

“I’m delighted to have been appointed as Shadow Minister for Disabled People. There is a responsibility on all of us to care for those in need. However many disabled people feel that they are unfairly being portrayed as scroungers and are feeling very vulnerable"

“Labour will be the voice for those in genuine need, who need extra help live a full life. The introduction of the Universal Credit will see support for disabled children halved, while the Severe Disability Premium is to be scrapped with nothing appropriate put in its place. We believe there can be reforms made to the system, but this is the wrong way to do it, and we will do all we can to stop these changes.”

Thanks also to John Pring of the invaluable Disability News Service who provided us with the press release from Anne McGuire. John is the only full time investigative journalist working on disability issues and without his fantastic service all those involved in grassroots activism would find it much more difficult to source the information we require.

This Little Piggy...Is Getting The Chop. #TBofB's Mel gets ready for surgery..

Today (Tuesday – you know my rule about days changing), I went to see my Orthopaedic surgeon again. This time, along with parents, my lovely EB nurse was by my side, too; the surgery being discussed wasn’t just new to me and my family, it also was new to the surgeon and the EB team. Oh yes, my feet were stamping on new ground.

Miraculously for an hospital appointment, I was called in a bit early! Well, my mum was; the room was titchy, I was right by the door and the SpR wanted to go through my medications, which my mum knows far better than I do *shamed face*. I and my dad were soon escorted into the room next door, where my tootsies were to be inspected. As we sat there, Dad asked if I was okay and, out of nowhere, tears burst forth. What if the consultant had changed his mind, Dad? I hate them. I truly hate my feet, and I need something, anything. Luckily, in these situations, Dad Hugs are the best treatment, especially when accompanied by a kiss on the head, and comforting words muttered into your hair while tears rain onto his jumper.

We underdressed my feet, and the SpR soon came rushing in, eager to have a look at these freaky feet, only before seen on the most bizarre x-ray ever taken. I don’t think he’d ever seen EB before, or heard of it before I first went to the clinic a few weeks ago, so he had a good look from every angle, “hmmmming” away in between asking me questions. I was glad he took such an interest – EB usually scares young doctors more than the debt they’re in!

Next in was the consultant, a lovely man who had given me some hope that my feet could be made more tolerable. He was almost excited to see my feet without their dressings, claiming he’d been waiting ages to do so (fibber – it was three weeks!). Again, much intense peering at my piggies, asking exactly where my pain is and exactly what it feels like.

No one has apparently ever seen toes do what mine have done. I’ll let you see the x-ray at the end… It shows why so many questions needed, and still need, answering!

I absolutely despise having my feet touched, as no part of them feels normal, either hurting like all hell or making me cringe, heave or jolt away. So I was amazed I didn’t panic when I saw the gloves going on, or pull away as he reached out. I realised, in the back of my mind, as I was letting him feel my most icky foot areas, that my feet had crossed the line from being so painful I wouldn’t have them touched, to being so agonising I would do anything to get help.

He had a gentle press, pull, poke and prod, carefully twisting my feet to the angle they should sit at (a scarily long way from where they do). Thankfully, he remembered exactly where my most terribly pain bit is and pulled his own hand away before he touched it. I couldn’t help but smile at my mum and EB nurse, who were both tensed and ready to pounce should he cross the line in their minds.

He confirmed that I am walking on my bones right under the skin; most people have pads of fat in the pressure areas on their feet. I have none at all, which explains a lot of the pain. Another new one for the surgeon!

Out came his iPhone for some snaps, as we exchanged questions, and a decision was made. He would take bones from the toes on my right foot, and see if that eased some of the pressure and pain. Once it was healed, and if it was successful, he would do the same on the left (which is more complex and so not a good starting point). If it didn’t help…well…then we might have to consider amputation. As it is, I’m the only one who will consider it. My parents verge on putting their hands over their ears and running away, shouting “lalalalalala! I can’t hear you!”. Purely because they are so scared for me. So I won’t consider it aloud anymore, for their sakes.

He said they would get back to me with a date for the surgery, at which point SpR went out of the room, to reply to a bleep, I thought. A few moments later, he was back: “You’re booked in for 1st December, if that’s okay?”. What NHS waiting lists?!

I listened and watched happily as the consultant took a surgical best practice outline for EB patients from my EB nurse, genuinely grateful for the help. Phone numbers, names and emails were swapped to co-ordinate everything and everyone needed to make the surgery as atraumatic as possible for me. Gratitude swelled inside me, making me feel rather emotional.

Now plans are underway for phase one of Fixing my F*cking Feet!

Come December, it’s all I’ll be blogging about!

Mel xx

Look at my toes – that’s why the ball of my foot is under such pressure, and thus SO painful. The surgeons have only ever see toes curl over before – which the very ends have done. But the 90 degree angle is a medical mystery. Someone call Scooby Doo and Quincy, MD!

Disability And Sickness At Labour Conference - The Easy Read Version

Huge thanks to everyone at United Response who've worked so hard to produce an easy read version of the Q&A session with Ed Miliband at the Labour Party Conference. Information about politics should be accessible to everyone, but we think this may be the first time information about an exchange between a disabled person and politician has been put into an easy read format. It is also a welcome collaboration between a grassroots disabled people's organisation and a charity showing all the political parties that people with learning disabilities are a powerful voting block who want and need to be enabled to engage with politics just like everyone else.

Please note we are aware that putting the easy read version into Jpeg format makes it inaccessible to people with visual impairments and we are working on getting the PDF version uploaded.
Update: PDF version available here 

Briefing – Welfare Reform Bill 2011, 10 October 2011 - By WinVisible

Briefing – Welfare Reform Bill 2011, 10 October 2011

by Legal Action for Women, Single Mothers’ Self-Defence and

WinVisible (women with visible and invisible disabilities)

Tel: 020 7482 2496   Replies to: win@winvisible.org

Dear Members of the Lords,

This Bill is being rushed through, cutting basic survival benefits, reducing entitlement without proper scrutiny and leaving out crucial details, such as benefit rates. Yet it will cost £2 billion to change systems.  The implications are frightening.  We are deeply concerned about how little money people will have to live on, and the sweeping sanctions being introduced.  They will lead to increased destitution, homelessness, children in care, illness and early death.  This must be stopped.

Universal Credit continues the phasing out of Income Support (clause 34). 

·      IS recognises that mothers and other carers are not unemployed, but are doing unwaged caring work which is basic to society and the economy.  Mothers reliant on benefits, single or in couples, are demeaned as “workless” and will be forced to become jobseekers as soon as their child becomes five (clause 57).  Before that, they are required to be involved in work-related activity.  Ever-younger children are deprived of their parents’ loving attention as both parents are subjected to jobseeking conditions regardless of the children’s needs.

·      Most single mothers already do waged work.  Getting a waged job is not a route out of poverty --58% of children in poverty live with someone in waged work (CPAG).

·      The whole family will suffer when benefit is stopped for trivial “breaches” of the jobseeking agreement. Already, vulnerable people have been cruelly sanctioned when they simply couldn’t read the jobseeking agreement.  Benefit can be denied for three years if someone refuses three job offers. 

·      Due to women’s raised retirement age, more women near the end of working age will be subjected to harsh jobseeking conditions.  These take no account of employers’ discrimination, including against people of colour and people with disabilities.  Why are jobseekers being victimised for the discrimination they suffer?

Clause 7: The move to pay benefit monthly in arrears must be scrapped. It will leave people, who now receive benefit weekly, without money for longer periods.  Already single mothers and single people report that the benefit runs out before the end of the week. We support the amendments to pay twice a month if chosen, and would prefer weekly. There should be no change until a review of the impact of monthly payments has been done.

Clause 8: We support the Zacchaeus 2000 amendments that the amount must meetindependently-researched minimum income standards, and the minimum for women of childbearing age and for pregnancy.  There must be an irreducible minimum untouched by overpayment recovery, etc.

Clause 10:  Additions for responsibility for children.

·      No amounts are set in the Bill. There must be no reduction on the amounts currently set for the Child Tax Credits and Income Support premiums. 

·      Universal Credit will be paid in a lump to one parent who claimed. Now mothers can directly receive Child Tax Credit regardless of which parent claimed, as it is widely recognised that mothers meet children’s needs first.  Fathers won’t necessarily pass this money to the mother. Provision must be made to pay Universal Credit allowance to mothers and/or fathers on pension credit which is out of the scope of this Bill.

·      Parents are already struggling as the Working Tax Childcare Credit was cut to 70%.   New money for parents doing less than 16 hours waged work a week does not make up for this cut.  We support amendments to increase the childcare subsidy and cover additional costs for a disabled child or higher costs by area.

·      Clause 11: Housing element of Universal Credit: We support Lord Kennedy’s move to delete this, keeping Housing Benefit.  We support amendments to help people keep the roof over their head, protect vulnerable tenants against having to move, and to keep payments to landlords (preventing evictions due to arrears).  Already, the Local Housing Allowance limits rent subsidy for private tenants, who have to use other meagre benefit money intended for food and bills, to pay rent.

Clause 12: Other needs.  We support amendments to include an amount for school meals and health costs. Alternatively all recipients of Universal Credit should be entitled to free school meals and exempted from NHS costs in line with what happens now.

Disability: Having one amount for disability, abolishes the extra Severe Disability Premium (SDP) of Income Support for people living alone.  What are people supposed to do about their high heating bills and other disability expenses which SDP recognised?  Entitlement to disability addition should not be tied to Personal Independence Payment, which will be restricted to thousands fewer people compared to Disability Living Allowance. 

Clauses 19 & 20  The exemptions from work-related requirements do not go far enough.    

Carers with regular and substantial caring responsibilities, and mothers of babies under one, are exempt, reflecting our previous lobbying. In 2009, breastfeeding mothers objected strongly to compulsory “work-focused sessions”.  Full-time disability carers were subject to work-focused interviews. Mothers of young children over one should not be compelled to attend work-focused interviews.   We want the choice to stay at home or to take waged work where manageable.  There is a large body of evidence that mothers with small children who wish to care for them but are forced back to work, have a greatly increased risk of depression, and that children aged under three especially are at increased risk of emotional and behavioural problems as a result of separation from a main carer, whose quality of care is not easily substituted. (Ref: Oliver James, Sue Gerhardt, and other child psychologists, biologists and health professionals)

Those in the equivalent of the Support Group of Employment and Support Allowance will be exempt, but this applies to a tiny proportion of claimants.  Most sick and disabled people are forced into work-related activity or jobseeking after the notorious Atos examinations.  Following concerns we raised, the British Medical Association is asking Atos if their employees act in their patients’ best interests – doctors conducting benefit examinations are bound by this duty.

Delete Clause 51 limiting contributions-based ESA to one year.  Cancer patients and others need time to recover.  Many are not eligible for alternative means-tested benefit.

Clause 52 deprives younger disabled people who were unable to build up NI contributions, of the higher contributions-based ESA, and reneges on the 2009 concession.

Clauses 60-62 take away contributions-based benefits, including maternity allowance from immigrant people who have paid tax, and subjects them to a test of “entitlement to work”.  This racism is abhorrent.

Clause 63 limits entitlement to industrial injuries benefit, ignoring the fact that some diseases take many years to develop.

Delete clause 68.  We oppose the housing benefit cap.  This will cause enormous impoverishment and disruption to families including those with a waged worker(s), and “ethnic cleansing” from wealthy areas.  Blame extortionate rents on landlords, not tenants. 

Delete clause 69.  We oppose abolition of the Social Fund. This is a lifeline to women and children fleeing domestic violence, ill and disabled people leaving hospital including those with mental illness, and prisoners, enabling them to set up a new home.  People increasingly rely on this fund in emergencies.  The government is shedding responsibility for vulnerable people, passing it to local councils with no legal duty to help and no ring-fenced funds. 

Clauses 75-81.  We oppose the abolition of Disability Living Allowance and replacement by Personal Independence Payment.  By abolishing the lowest rates, the government will deprive 78,000 disabled people of benefit, including people who rely on this to continue in waged work.  The longer qualifying period of six months will cause immense hardship.  People in residential care need mobility money to go out.  Tying PIP to working age will again deprive pensioners in need of mobility component.

Clause 93.  We oppose the benefit cap which will harm families with least resources.  ChildBenefit should not be included in the benefit cap – mothers earn it, children need it.  It must remain universal and is often the only money which mothers can call their own.  Carers’ Allowance, which is outside this Bill, should also not be included in the cap.

After clause 98.  Prisoners.  We support Lord Ramsbotham’s new clause to help prisoners (many are mothers) to have benefit quickly in place when they come out.

Clause 102 – recovery of benefit overpayments.  We support the amendment to protect claimants who didn’t know they were being overpaid.

New clause after 113.  We support Lord Ramsbotham’s amendment that DWP staff must be fully aware of claimants’ circumstances before imposing sanctions, fines and recovery of overpayments.

Clauses 131-134. Child maintenance.  Mothers will unfairly have to prove that they cannot make a private arrangement before the Child Maintenance and Enforcement Commission will step in.  This is on top of being charged for maintenance collection. http://www.gingerbread.org.uk/news/98/Welfare-Reform-Bill-proposals-risk-jeopardising-vital-child-maintenance

There is no guarantee that the new untested IT system merging the DWP and Inland Revenue will function to meet the needs of growing numbers of people losing their jobs and current claimants – leaving vulnerable adults and children without money. 

Already, experienced staff who had a public service commitment, have been replaced by call centres and privatised “back-to-work” companies working to targets and for profit.

Tories dishonest to get public onside before plans launched...

 Guest blog from Humanity Before Hatred

The Tories are playing a very clever, but disturbingly immoral game with the benefits system. They plan to make dramatic changes to the system for people claiming DLA in 2013. DLA will be scrapped, and replaced with PIPs: Personal Independence Payments. This has been opposed by many disability charities, but to no avail.
 When the changes begin, many people with serious disabling conditions will find themselves cut off from help. This is likely to cause an initial negative reaction from the general public, as they witness vulnerable people being forced into an even more vulnerable position.

So, what can the government do about this anticipated lack of support for their policies? Well, cleverly, they have chosen to repeatedly downplay the needs of disabled people and to encourage disability discrimination. Ian Duncan Smith is particularly making encouraging progress in turning the public towards disabled people, and, as ever, the Daily Mail are lapping up the opportunity to spread the hate, like overenthusiastic teachers' pets...

The Daily Mail published  THIS article this week. As well as insultingly belittling a condition which can be hugely stressful for many families, the article also printed other grossly innaccurate information.

(...a brief pause to allow you to get over your shock at the last part of that sentence...)


FULL FACT
Full fact stepped in once again, to investigate the Daily Mail's claims, and to help put the record straight HERE. This was their conclusion:
"The Daily Mail's claim that 3,200 people with ADHD have used the Motability Car Scheme is inaccurate. The number eligible for higher rate DLA- and therefore Motability vehicles- is recorded as 100 by the DWP, some way short of the figure given by the Mail.
 However even if we conflate behavioural disorders with ADHD, as the Mail appears to have done, it is likely that the number using the scheme would fail to top the 3,200 claimed, as only 30 per cent of those eligible end up using the scheme. 
To cap it all off, the article also downplays the severity of the disability that is needed to qualify for the Motability Scheme."

ADHD
Other than being aware that many families face enormous stress in dealing with the behavioural problems of ADHD, I know very little about the condition. However, the NHS website states that "Many people with ADHD also have additional problems, such as sleep disorders or learning difficulties", so to make assumptions about their needs by generalisation of the condition is, I believe, unwise. 

Not happy to leave the damage there though, Richard Littlejohn, journalist for the Daily Mail, wrote THIS piece , stating that "Even naughty schoolboys diagnosed with the make-believe disease 'Attention Deficit Hyperactivity Disorder' (ADHD) are classified as disabled." Obviously he has an extensive medical background qualifying him to make such judgements...oh hang on, my mistake...


MOTABILITY SCHEME

An extract from the Mail article..
"To get the motability element, families of sufferers must prove they need 'guidance or supervision most of the time from another person when walking out of doors in unfamiliar places.' They can either spend it themselves on transport, or have it paid directly to Motability to provide a lease car". 
For anyone not aware, the motability element of DLA is split into two parts: lower rate and higher rate. The quote above is directly taken from the descriptors for the lower rate. To be eligible to use the Motability scheme, you MUST be receiving the higher rate.

I've previously written a post about the Motability Scheme, but given the utter tosh that is circulating in the media on the topic lately, I think a few points of fact are worth repeating...

• Only people receiving the higher rate of DLA are eligible to use the Motability scheme.
• The DLA forms are over 50 pages long, and requires medical evidence to support each claim.
• DLA is not about your ability to work. It is about your care needs, and your mobility needs. Many people receiving DLA are working, and without the funds to cover the extra costs incurred through being a disabled person in the workplace, would have to give up their job.
• The Motability scheme allows you to nominate up to two people to drive the car for you. You do not have to be in the car when it is being driven, but the trips must for your needs.
• Motability cars ARE NOT FREE. It is a lease, the car must be returned within three years, and is paid for with the higher mobility element of the DLA, should you choose to spend your benefit to which you have been found to qualify for, in that way.

• Very few people using Motability have 'luxury cars', due to the four figure sum needed to be paid as an extra fee, which most people on benefits simply can't afford (...and that's not because all of their money has gone on plasma tv's and holidays... that is a Daily Mail myth too!)

The government, and some of the media, are relying on the general public to not check out the facts before believing everything that they are spoon-feeding them.
Luckily for them, government and media aren't being disappointed...