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Participants with long-term health problems were frequently in receipt of benefits aimed at people with chronic illnesses and disabilities. These include Personal Independence Payment (PIP), Employment and Support Allowance (ESA) and Disability Living Allowance (DLA).⁷ Making claims to these benefits involves a lengthy application process, consisting of a detailed form describing health conditions and a face-to-face medical assessment with a ‘healthcare professional’⁸ subcontracted by the Department for Work and Pensions (DWP). In the event of an unsuccessful application, many participants elected to go through a process of appeal, which could take many months. The claimant must initially make a written request to DWP asking for reconsideration of the decision. If the claim is still unsuccessful at the reconsideration stage, the claimant can make a further appeal to an independent tribunal.

The decision to make a new claim for benefits (or to challenge the rejection of a claim) involved careful consideration of the advantages and drawbacks of an application. This was captured in a fieldnotes entry, in which two participants weighted their options in making a claim for PIP:

In Luton a couple came in looking to claim Carer’s Allowance. I explained to them that Carer’s Allowance is only available to carers of people in receipt of PIP or DLA, which neither of them was. So I called DWP and requested a PIP form. This couple came back the next week explaining that they didn’t want to fill in the PIP form out of fear that they would lose their Employment and Support Allowance.

- Fieldnotes, Luton, 17/03/2016

While it is possible to receive PIP and ESA concurrently, these individuals feared that it would upset the delicate balance of their income from employment and benefits, leading to an overall reduction in their income. This offers insight into the manner in which participants navigated benefits systems, the precariousness of their economic situations and their reluctance to upset the delicate balance of income stability.

7 PIP looks at an individual’s need for assistance with a range of daily living activities and is awarded without consideration of income or employment status. ESA focuses on an individual’s ability to work. DLA bears a close resemblance to PIP, but is exclusively for people under the age of 16.

8 It is unclear how the firms contracted by DWP (Atos, Capita and Maximus) recruit and train assessors (BBC, 2018).

Capita’s eligibility requirements state, for example, that assessors must simply be ‘fully qualified healthcare professional[s]’ with at least two years’ experience (Capita, 2018). It is unclear whether assessment firms make any effort to match claimants’ needs to assessors’ qualifications.

While the above example demonstrates a relatively advanced knowledge of benefits systems, other segments of Roma communities had more limited understanding of state support systems and the requirements of making claims for health-related benefits. In these cases, participants’ decision to apply for benefits brought substantial confusion, as became apparent when assisting a participant to apply for DLA for her son:

It was the first child’s DLA form I had seen filled out in Luton, and the mother appeared relatively disengaged and confused throughout the process. She seemed reluctant – or unable – to offer any in-depth description of the issues created by her son’s diabetes.

- Fieldnotes, Luton, 10/10/2016

The mother lacked the vocabulary necessary to describe her son’s health conditions (an effect of limited education, as well as limited prior access to health services), and she felt intimidated by the level of medical detail that the claim form required her to provide. Even with the support of an advocacy worker, she found it difficult to answer questions regarding specific details of her son’s support needs.

Often it was only with external support from voluntary organisations that Roma community members were able to understand the stages of a benefits claim process, ensure that claim forms were completed correctly and engage in follow-up communication with DWP. A fieldnotes entry describing the process of assisting with an ESA application captured the difficulties of assembling the documentation necessary to complete the application form:

To get a sick note, we needed to request a replacement from the psychologist who had written the original. When I called him, though, I found out that he had changed jobs. So I then called his new workplace, and he told me that the system had been somehow restructured, making it impossible for him to gain access to the sick notes he had written previously. Our only recourse was to go back to the client’s GP and request a sick note, but this particular GP doesn’t issue sick notes.

- Fieldnotes, London, 29/04/2016

The burden of evidence is placed on the claimant, and this could create substantial delays in completing benefits applications. Many participants engaged over the course of fieldwork had misplaced the documentation necessary to evidence their benefits claims; others had kept reams of medical documentation, yet due to language and literacy issues, many did not understand the information contained in these documents, nor did they know which should be submitted to DWP.

After making an initial application for health-related benefits, claimants are required to attend an assessment with a ‘healthcare professional’ subcontracted by DWP. For those in need of language support, DWP provides interpreters over the telephone as a standard practice, which a participant describing her husband’s claim for PIP highlighted as a barrier to adequately explaining his condition:

It was hard to understand, and also from this side, it was difficult to express ourselves and to describe everything. You know, like when you have to talk to the phone and not to the real person.

- Female, Polish Roma [007] 

Her husband’s health problems had an impact on his ability to move his legs, yet he found it difficult to verbalise these difficulties without accompanying physical demonstrations. Not only did this demonstrate participants’ impression that benefits systems provide inadequate support in making their claims, but it also reflected how low levels of medical vocabulary could affect benefits applications.

Limited formal education meant that many participants lacked the vocabulary to describe their health issues, and they thus relied heavily on mimetic motions to communicate. Interpreters can suggest terminology correlating with participants’ movements, at which point participants are often able to confirm the names of their conditions. When an interpreter is absent from the assessment room, however, participants are unable to execute this key form of communication.

In light of the difficulties associated with communicating through a telephone interpreter – especially when the assessment requires demonstration of physical movement – many participants opted to bring an English-speaking family member instead. While this could help to alleviate participants’ fears that they would be unable to communicate with assessors, it also had the potential to introduce cultural communication barriers into the assessment.

Cultural barriers to communication were reported to arise when participants felt that the assessment question topics – for example, managing toilet needs or washing and bathing – required them to describe parts of their bodies that Roma culture traditionally considers inappropriate for discussion.

While some adopted a pragmatic approach to answering assessment questions and temporarily set aside their conceptions of health-related taboos to provide detailed answers, others were reluctant to detach themselves from their traditional views of health communication. One Polish Roma woman discussed how she found herself unable to disclose the full details of her assistance needs due to their cultural implications:

The questions are hard – not the questions but the answers. I need the help, but because of my culture I cannot say.

- Female, Polish Roma [008] 

Field observations also reflected a gendered dimension to this reluctance to divulge sensitive medical details:

Men tend to be particularly reluctant to divulge any information that might make them appear weak. One man admitted in the process of filling in his PIP form that he does have problems with washing and bathing, but he didn’t want to explain the details because he felt ashamed.

- Fieldnotes, London, 17/02/2016

Similar observations were repeated across fieldnotes entries, with participants lowering their voices when discussing their needs in using the toilet and bathing themselves.

Even when language and cultural barriers were not an issue, many participants noted tense interactions with DWP assessors. Their accounts highlighted assessors’ dismissiveness of the severity of their conditions, and some suspected that assessors inaccurately recorded vital medical information:

No, it was really bad. I just want to left and that’s it. I’m thinking about to left the room. The lady was, um, she didn’t hear me really. I didn’t have interpreter with me because I was thinking I don’t need it. But she give the answer, she give the, um, questions and she answers. That’s what she does. She just sent the reports and write down… I … I’m healthy. She didn’t see nothing with my health. What she saying as well? I’m very like, uh… I can manage with other people and everything and stuff, and she can say I’m healthy.

- Female, Polish Roma [011] 

This participant notes how the assessor failed to adequately represent her health problems, making a reference to the absence of an interpreter as a potential reason behind the assessor’s dismissiveness. In other cases it was reported that assessors did not make sufficient efforts to gather supporting medical information:

When this assessment took place, they haven’t asked for any documents from GP, they made decision only what was on the form and based on the assessment. Because I call DWP later, I wanted a report from how they made the decision, so the chap from DWP told me that they haven’t asked for any medical evidence from GP doctor or any specialist.

- Community advocacy worker, London-based [CW001]

Participants repeatedly noted how the DWP assessors would write answers to assessment questions without offering adequate time to give a response. Although participants were aware of the incompleteness and inaccuracies of assessors’ accounts, their position of relative vulnerability in comparison to the assessor afforded them little influencing power in affecting the outcome of the assessment.

Many participants lacked the English language proficiency to articulate their dissatisfaction with assessors’ behaviour. Assessors, by contrast, asked a set of rigid, pre-determined questions – which many participants found difficult to understand – with a computer forming a physical barrier between assessor and claimant. Participants found the assessment process intimidating, with one likening it to a police interrogation:

And when he left I felt like I was shaking, like I was very nervous. I wanted to do it very good. I wanted to be too good – that’s why maybe. Basically he asked me one question, he asked me a few times, like 3-4 times, to check if I would give the same answer, so that’s why I felt like I was in a police station and like I have to confess something, like I did something and I have to say the truth.

- Female, Polish Roma [012] 

Expressing her feeling she was forced to confess to a crime that she did not commit, this participant conveyed her interacting feelings of stress and powerlessness as she underwent her disability benefits assessment. Yet this account not only reflected her personal distress, but also suggested the fraught relationships between Roma community members and people in positions of authority. For many participants, they described their contact with representatives of benefits systems as decidedly non-neutral, orienting themselves in a position of inescapable disadvantage as they navigated systems of welfare support.