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Claiming Disability Benefits

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Claiming Disability Benefits What we think about: Claiming disability benefits Rebuilding lives after stroke Background People claim benefits for a range of reasons, from helping with the costs of raising children to support with funeral costs. Some are available to everyone, like the State Pension, while others are based on personal circumstances, such as benefits for those who are out of work or have a disability. Stroke is a leading cause of disability in the UK, with over a million people living with the devastating effects of stroke. That means many stroke survivors are likely to be entitled to disability benefits such as Personal Independence Payment (PIP), Employment and Support Allowance (ESA) and Attendance Allowance (AA). More information on these benefits can be found in the Q&A section below. Carers are also eligible for benefits to support them in their caring role. Most disability-related benefits are controlled by the UK Government but responsibility for some has been devolved. For example, the Scottish Parliament has been given significant new powers over some disability benefits including the Personal Independence Payment.1 More information on these types of benefits can be found in the Q&A section. What we think about: Disability benefits 2 What we think Stroke causes a greater range of recognise. Too many people also wait disabilities than any other condition. too long for decisions to be made The benefits system should be fair, about their applications, which leaves quick and accessible for stroke them without vital financial support, survivors. However, we know that this sometimes for long periods of time. is often not the case. These problems are unacceptable and Stroke survivors and carers tell us the Government has a responsibility that claiming benefits can often be to improve things through working a difficult and complicated process. closely with those most affected, as Application forms are challenging or well as charities and other experts. impossible to complete for anyone who has difficulties with reading We want applying for and claiming or writing. Assessors, who decide disability benefits to be a simple, on the outcome of someone’s swift and respectful process which benefits application, often don’t involves assessors who have a good know enough about the complex knowledge and understanding of how effects of stroke and how much of stroke affects people. an impact they can have on people’s lives. This is particularly the case for the hidden effects of stroke, such as fatigue and difficulties with memory, concentration and problem solving, which are not easy to explain or What we think about: Disability benefits 3 Why do we think this? Stroke is a major cause of suddenly, often leaving the survivor with immediate, unexpected and disability, affecting people’s life-changing disabilities. One stroke ability to work and increasing survivor told us: their living costs, so many stroke survivors are entitled “I had to retire from work. I do not drive. I require a caretaker. I was a to benefits healthy, employed, very independent person before my stroke. The Stroke is a leading cause of disability disabilities and change in lifestyle in the UK. Almost two thirds of 7 survivors leave hospital with a have been devastating” disability in England, Northern Ireland and Wales.2 People of working Applying for benefits is too age who have had a stroke are two challenging to three times more likely to be unemployed eight years after their Stroke survivors and carers have stroke3 and almost a third of stroke told us that the disability benefits survivors say they have to spend more applications process is too long and on daily living costs.4 complex, particularly when dealing with the effects of a stroke. No two people are affected by stroke Just under half of those who in the same way. Stroke causes a responded to our survey on disability greater range of disabilities than benefits described the application any other condition.5 It can impact process for PIP as ‘poor’ or ‘very poor’, everything from eyesight to mood to with 61% saying they needed help swallowing. Around a third of stroke filling in application forms.8 Feedback survivors have aphasia, affecting was similarly negative in relation to their ability to speak, read, write or ESA, with 46% telling us that they felt understand language.6 Unlike many the assessment didn’t take the unseen other conditions, stroke strikes effects of stroke like difficulties in What we think about: Disability benefits 4 controlling emotions into account. over 1000 enquiries about benefits Over a third of respondents rated the from people affected by stroke. Most application process for Attendance of the queries were around finding Allowance as ‘poor’ or ‘very poor’, with out what benefits stroke survivors are 47% saying they needed help filling in entitled to, people losing money when the form. being switched from Disability Living Allowance to PIP, being declined a Recent research with stroke survivors benefit, and help with filling in forms, in Northern Ireland also highlighted either for an initial claim or for an that the benefits system is confusing appeal process. and complicated, and that forms can be difficult, or impossible for people Many of our stroke support co- experiencing the effects of stroke to ordinators help stroke survivors and complete.9 The stroke survivors we carers throughout the benefits process. spoke to were also often unaware of They have also told us that application sources of help available to them such forms can be lengthy and confusing for as Citizens Advice. all stroke survivors and particularly for those with communication difficulties. Between September 2017 and August 2018, our Stroke Helpline received What we think about: Disability benefits 5 There is not enough survivors, their families and carers understanding of stroke worry that the full extent of their in the benefits system disability is not going to be taken into account when the assessor decides whether or not to grant benefits The effects of stroke can be complex applications. It can also mean that and not always obvious. Around a stroke survivors are deemed fit for third of stroke survivors experience work when in reality they are not. some level of aphasia, which affects their ability to speak, write, read or One stroke survivor told us that they understand what others say.10 87% of weren’t deemed eligible for PIP “as those who responded to our survey the effects of my stroke were hidden”. about benefits said they struggle with In response to our benefits survey, fatigue or difficulty in understanding.11 another stroke survivor suggested that Stroke survivors also can have severe assessors “aren’t educated enough on problems with memory, problem the different effects a stroke has from solving and concentration. These one person to the next”. hidden effects of stroke can be difficult for people to clearly describe This view is supported by a and difficult for assessors who do parliamentary report which found not sufficiently understand stroke to that disability benefit claimants were diagnose: not receiving an “acceptable level of service” from the contractors the “I knew I was different but couldn’t Government pays to assess people. totally explain why or understand it, I They found that assessors don’t didn’t know what I was experiencing understand the full range of disability was common after a stroke. I found associated with having a stroke, in it very hard to tell people I was particular mental health problems struggling to comprehend what which often affect so many stroke was going on around me or why I survivors.12 The report recommended was forgetting so much. It was very that the Department of Work and frustrating.” Pensions and its contractors should employ “well-trained, knowledgeable Stroke survivors tell us that these assessors who are sensitive to the hidden effects of stroke are either not complex issues that claimants are recognised or not seen as important dealing with.” by benefits assessors. This means What we think about: Disability benefits 6 The Department accepted this variations in the performance” of recommendation and committed to the Government assessors and that working with contractors to improve those trying to claim benefits are their training plans and materials not receiving an acceptable level of for assessors to ensure that they are service.14 equipped with the relevant skills and knowledge to deal sensitively with claimants and the various issues Claimants are waiting too long presented by their conditions. 13 for a decision to be made According to the latest statistics, Stroke isn’t well enough people who are claiming PIP for the understood by assessors first time have to wait an average of 14 weeks between submitting a claim and Our stroke support co-ordinators have a decision being made.15 Stroke can told us that assessors can often lack have a devastating financial impact understanding of the ways stroke on the lives of survivors and their can affect people. This is supported families. Stroke survivors often can’t return to work and home adaptations by a parliamentary committee who can be costly. Long waiting times for a found serious problems with the decision to be made about a benefits performance of assessors used by the claim can leave those affected by Government to deal with applications. stroke without vital financial support The committee found that there are when it is most needed. “unacceptable local and regional What we think about: Disability benefits 7 What do we want to see happen? We want the disability benefits particularly important for stroke application process to be simpler, survivors, many of whom have fairer and quicker, with more communication difficulties as a consideration given to the unique result of their stroke; nature of stroke as a long-term condition.
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