Tag Archives: Employment Support Allowance

“I have a love-hate relationship with my benefits”

Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.

I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.

When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.

My most heart-breaking moment

I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.

In 2011,  I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.

Josie, a disabled woman, wears a face mask to protect against allergens
Josie wearing her face mask

In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.

It made me anxious and worried

In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.

This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.

I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.

Josie, a young disabled woman, following a reaction where her face has swollen and become red
Josie following a reaction with swelling and redness

I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.

In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.

Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.

What needs to happen next

My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.

We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.

Visit Josie’s blog site to learn more about Mast Cell.

If you have any questions about benefits or employment, contact Scope’s helpline where we provide free, independent and impartial information and support to disabled people and their families.

You can also start or join a discussion on our online community.

Behind the figures: what do today’s sanctions figures mean for disabled people?

New figures out today show the scale of the Government’s new sanctions regime. In total, over 90,000 disabled people have had their benefits suspended for anywhere between 3 weeks and 3 years. Here’s four things you need to know:

How many disabled people do sanctions affect?

Since November 2012, when sanctions were tightened, 90,004 disabled people have had their benefits suspended.

This breaks down as 82,860 disabled people on Jobseekers Allowance (JSA) – the out-of-work benefit available to everyone – and 7,180 disabled people on Employment Support Allowance (ESA), which is meant to be for those who face the biggest barriers to work.

This means that 1 in 7 of the total number of JSA claimants who’ve been sanctioned are disabled people, and 4 in 5 of the total number of ESA.

How does this compare to previous years?

It’s hard to say exactly, because DWP haven’t published figures specifically for disabled people before last year.

But looking at the figures for those on ESA – the majority of whom are disabled people – we can get a sense of how many more people are being sanctioned under the new regime. The increase is pretty shocking.

Since December 2012 the number of ESA sanctions was 11,400. For the same period in 2011/12, the number of people sanctioned was 5,750. This is an increase of 50%.

Compare this with an 11% increase for JSA sanctions year on year, and it’s clear that the regime change has had an even more dramatic effect for those who face the most barriers to work.

Why are people being sanctioned?

What the stats show is people being sanctioned for things like missing interviews with advisers, or not engaging with the Work Programme, or sending enough job applications.

What they don’t show is the reality for disabled people: interviews with advisers clashing with medical appointments; inaccessible transport; advisers without specialist understanding of conditions and impairments; a lack of jobs with the flexibility disabled people often need.

Do sanctions work?

No. Disabled people face a wide-range of barriers to work. Lack of available jobs, fewer qualifications and even negative attitudes from some employers can make the workplace daunting.

So simply taking away benefits from a disabled person really doesn’t help – as the Joseph Rowntree Foundation have repeatedly pointed out. In fact, suspending benefits can make things worse: stats from the Trussell Trust show that increasing use of food banks is linked to the tightening of sanctions.

Instead of simply suspending benefits for no reason, we need a system that actually works for disabled people, that supports them to find a job they want, and that takes seriously the barriers they face.

How can we better support disabled people’s career journeys?

Guest post from Rob Trotter, Public Policy Advisor (Employment and Skills) at Scope.

The current labour market is a challenging place for disabled people. Over half of all disabled adults are unemployed. Most want to work but can face extraordinary barriers to finding and retaining a job.

Employment support – to help disabled adults find, prepare for and progress in work – is a vital part of removing these barriers. This can be anything from financial support like Access to Work, to help to find vacancies and prepare for interviews.

It’s welcome that the Government has announced in the 2013 Spending Round that £350 million will be available for employment support programmes. This investment could prove a vital lifeline for disabled people at every stage of their careers, from the first steps in looking for a job, to the support needed to progress.

But the challenge is that current employment support programmes aren’t yet effectively supporting disabled people. For instance, only 2.9% of Employment Support Allowance claimants – nine in 10 of whom are disabled people – have found a job through the flagship Work Programme. Too often, programmes focus only on job ‘outcomes’ rather than the needs of the person.

So today, five leading disability charities have published a major report setting out new ways to improve employment support for disabled people.

The report – Work in Progress: Rethinking employment support for disabled people – calls for a personalised, multi-agency approach which focuses on empowering disabled people to lead their own career journeys.

The report recommends that:

  •  There needs to be greater involvement of employers in the design and delivery of employment support
  • The Government should incentivise greater localisation of employment support for disabled people in order to stimulate innovation
  •  A more targeted approach should be taken for young disabled people who face particular challenges and often cannot access effective support

It also outlines how the quality of support can be improved, and calls for much greater empowerment and involvement of disabled people in their own journeys through work.

An Annually Managed Expenditure (AME) cap could mean further cuts for disabled people

Nearly a week on from the Spending Round, there has been time to think about what a welfare cap might mean for disabled people.

In last week’s Spending Round, the government announced that – for the first time ever – there will be a cap in the UK’s welfare spending through changes to Annually Managed Expenditure (AME). This part of the budget responds to the needs of the economy, and the people within it. So if one year more people need benefits, pensions or tax credits – AME makes sure they get them.

But all of this is about to change. In 2015 the government will put a limit on how much it will pay out in social security.

And disabled people aren’t protected.

State pensions will be excluded from the cap, as will Job Seekers Allowance (JSA), but disability benefits, housing benefit, tax credits, and pensioner benefits will all be included.

How will the cap work?

It will be set as a limit each year at the time of the budget statement, starting in April 2015.

After that, if the government looks like it is about to spend beyond the cap, a public warning will be issued by the Office for Budget Responsibility (OBR) .

Ministers will then be faced with a difficult decision; refuse to meet the needs of those in the worst situations in our society, or publicly breach the cap.

What does it mean for disabled people?

Disability benefits such as Disability Living Allowance and Personal Independence Payments – which go towards covering the extra costs of being disabled – will be vulnerable to the cap. The amounts spent on Employment Support Allowance, too, will be subject to these limits. Universal Credit  will subject to the cap as well.

The Chancellor wants to exclude the “most counter-cyclical elements” from the cap – those which rise most sharply when the economy falters. But the need for Housing Benefit -which is included in the cap – increases during recession. If the economy takes a downward turn, the cap will pitch disability benefits against Housing Benefits in an innappropriate trade-off.

Disabled people are already set to lose over £28bn through welfare changes. The cap on AME comes as yet another blow to the their living standards.

Yesterday the Chancellor announced a £3.8 billion investment in social care –  the support disabled people get from their council to get up, get washed and dressed, and live independently. But by placing arbitrary limits on the amount spent on welfare, without the right safeguards, the government risks wasting these investments, and disempowering disabled people completely.

The chancellor promised that “those with the broadest shoulders [will] continue to make the biggest contribution to fiscal consolidation”. But in reality it is those most in need of support who will bear the burden once again.

Most of all, introducing a cap will radically change the meaning of social security. Without budgetary flexibility, which responds to the needs of the society, the government will risk punching yet more, deeper holes in the UK’s social safety net.