Social Security Experience Panels - Seldom Heard research programme: carers and care experienced

This report presents the main findings of the first wave of research with carers and care experienced people as part of the ‘Seldom Heard Voices’ research programme.

This document is part of a collection

Annex A: Main challenges concerning specific sub-groups

All of the challenges and barriers reported above were experienced by all of the sub-groups in our study: young parents, care experienced people and kinship, foster carers and adoptive parents. Nevertheless some the challenges and barriers were more pertinent or were experiened more fequently for each of the sub-groups.

Young parents

This sub-group reported general difficulties with accessing the benefits system.

Faced with confusion

Young parents reported facing confusion at the start of their benefit journey. They told us they lacked awareness of benefits and had limited knowledge of application processes.

“Very hard to understand and follow everything [information] unless you understand what you’re looking for.”

[Young parent respondent, online survey]

Inconsistent information and advice

The initial lack of awareness and knowledge was compounded by receiving inconsistent and, in many cases, contradictory information. A few reported getting misinformation from official sources. This manifested as being given information, and even payments, that they later found were incorrect. Overpayments could occur which caused financial difficulties when they have to be re-paid.

“It’s like how am I supposed to know what I am getting? We were actually overpaid as well and we had to pay it back out of the next payments. But we didn’t know we were being overpaid… but then they [JCP staff] realised that actually, he’s [partner] a student and his income is from student loans, so they looked at it again and we had been overpaid... They really need to work on it for students. They really, really need to do that because like I was getting so much misinformation from different sources”.

[Young parents, focus group]

Lack of support

As well as this initial confusion and inconsistent advice young parents reported experiencing a lack of support when they reached out for help with benefits, despite asking repeatedly for help. They specifically mentioned this could be from Job Centre Plus staff and other official channels.

“Like I can’t tell you how many times I have had to have an appointment and I have gone in [Job Centre] and they are like we don’t know why you are here, then I have gone away and then asked to come in again.”

[Young parents, focus group]

Care experienced people

This sub-group reported leaving care with no understanding of the benefit system or how it worked, and facing stigma and distrust when they applied for benefits.

Lack of knowledge of the benefit system

Care leavers, particularly those leaving care aged 16, reported having minimal knowledge of, or experience, with the benefit system. They had no conception of what benefits were available or where they could get information on them.

“I’m not sure if being homeless comes under the housing benefits… No, I haven’t [claimed housing benefits]…because I don’t have any understanding about it, I’ve never had my own house.” [Care experienced participant, focus group ]

“A lot of young people and care experienced young people don’t know which sites can tell you what your entitled too and therefore they never find out”.

[Care experienced respondent, online survey]

A few stressed that their social workers had not provided them with information on benefits. And some only found out about benefits coincidentally during conversations with friends and relatives.

“For the most part, you don’t know about these things, even when you need them. It’s usually afterwards, or at a point in time when someone else knows something about it. It’s not something that’s particularly common knowledge for the most part.” [Care experienced participant, focus group]

Difficulties of not being eligible to benefits until they are 18 years old were also noted.

“I can’t even claim anything when I’m near enough turned 18. I’m expected to pay my own way, but I’ve no idea how the Government is expecting people to do it...The system is set up in a way that as soon as you turn 16, you’re classed as an adult and you can’t claim any sort of benefit until you turn 18. So, what are you meant to do for those two years? I don’t understand what it is you’re meant to do. Are those two years meant to be a survival challenge?”

[Care experienced participant, focus group]

Difficulties with application processes

Care experienced people, as well as an initial lack of knowledge, found application processes difficult.

This sub-group found application forms challenging, PIP forms were frequently mentioned as the most difficult to complete, and a few indicated they had further difficulties because their specific individual circumstances. Some respondents and participants from this sub-group told us they relied on support from third sector organisations to complete forms.

“The questions [were] quite difficult. I had to get support to fill in the PIP form and limited capability for work.”

[Care experienced respondent, online survey]

“Forms are really hard for me and especially because they are not designed for people with my type of difficulties”

[Care experienced respondent, online survey]

Care experienced respondents and participants found the long-time between application and payment created financial difficulties. This was particularly when they did not have a support network to rely on when waiting for decisions and payments.

As a part of the application process, this sub-group found particular difficulties gathering together the evidence they needed to apply for benefits.

“Providing the proof required can sometimes prove very difficult”.

[Care experienced respondent, online survey]

“…other hurdles would be access to information. For example, having your own birth certificate, or having some information from your doctor, stuff like that. It’s a lot of things you have to scrounge together. And a lot of people that move into flats or fall into homelessness don’t have a lot of those things, or access to a lot of those things easily. For example, if you lose your birth certificate, you can go to a Government building and pay about 60 quid for a new birth certificate… it’s kind of hard to come by if you don’t have an income.”

[Care experienced participant, focus group]

Stigma and distrust

Compounding the lack of knowledge and difficult application processes care experienced people reported being stressed, anxious, embarrassed by the attitudes of some staff working in the system. These attitudes frequently came from DWP and Job Centre Plus staff, respondents and participants reported that they experienced a lack of understanding or a lack of awareness of the specific circumstances faced by care experienced people. Many felt they lacked of empathy, a few experienced a wide-ranging negative culture within the benefit system toward people who rely on benefits.

“I find the staff to be extremely short-tempered and obnoxious.”

[Care experienced respondent, online survey]

“Lack of empathy, understanding, knowledge.”

[Care experienced respondent, online survey]

Kinship, foster carers and adoptive parents

This sub-group suffered because of a lack of awareness of entitelment to benefits and grants for the children they cared for, confusion about whether they or the natural parents were entiteled to benefits, and difficulties benefits for the disabled children they cared for.

Lack of awareness of benefit entitlement

Kinship, foster carers and adoptive parents reported being unaware that they were entitled to benefits. They told us they frequently found out coincidentally when liaising with public sector workers, peer/service users or acquaintances. In some cases, specifically for Kinship Carer Allowance, respondents and participants did not claim for some time because they didn’t know they were due a payment.

“I never got any money for seven years because I didnae ken about it, it was somebody in the playground, another kinship carer, came up and said ‘you must be glad that the money’s gone up’, and I was like ‘what money? I dinnae get any money’…If someone hadn’t walked up to me, I would still be standing at the school gate, not knowing [about Kinship Carer Allowance]. It was another parent, another kinship carer that knew me, that came up and said. And if it wasn’t for her, I still wouldn’t have known.”

[kinship/foster carers and adoptive parent, focus group]

Confusion about benefit entitlement

In some cases, people reported to us that biological parents were still claiming benefits for the children that were now in their care. Often they were unsure who was entitled to the benefit and if it was them how they should go about getting it.

“…his mum was still getting money and the social worker wanted it stopped and they said to me ‘you’ll need to apply for it’ and I said, she’s still getting it and they’re not going to pay [the] two of you. But they said, “she’s not entitled to that money, they’re not getting it.” Social work said, ‘you’re entitled to it, you’ve got the child’”.

[kinship/foster carers and adoptive parent, focus group]

Access to official documents

Collecting evidence for accessing some benefits acted as barrier for this sub-group, as official documents required for a claim could still be in the hands of biological parents or lost.

I had to get the schools and nurseries to write letters as well to state the kids went to school and nursery for my Universal. I had to take in their birth certificates, which, I didn’t even have the girls’ birth certificates! Their mum had them. So I had to then say to her, you need to give me the birth certificates, I need them. Otherwise I was going to have to pay to get them. And it was like three or four times I had to take all this paperwork in, just to justify-

[kinship/foster carers and adoptive parent, focus group]

Difficulties with disability benefits

Many kinship/foster carers and adoptive parents were looking after disabled children or a child with a long-term health condition. Once again there was a lack of awareness of the payments they were due, and some reported missing out.

Further, this sub-group experienced many problems with the application processes for PIP, DLA and Carers Allowance. Our participants and respondents found the application forms complex and assessments not able to take into account chronic and fluctuating illnesses. They also experienced an environment of distrust in assessments and appeals that left them with stress, anxiety and feelings of being undermined. One final issue was the frequency of reassessments, most especially when conditions were unlikely to change.

“…my son has chronic long-term conditions. They’re not going to change. So, a two-year renewal process is just too short. I do get for some people, they might be in a short-term situation, but my son has complex needs and that’s not going to change… it’s the first time that I’ve claimed something- I found it really distressing and really, really challenging and I was quite shocked actually about how hard it is to get support.”

[kinship/foster carers and adoptive parent, interview]

“The other thing is when they sent you for medicals - the Department of Work and Pensions send you intermittently for medicals - I found that more stressful … I think they should take time for the person to explain the actual situation they’re in, and all the knock-on effects that has on them.”

[Kinship/foster carers and adoptive parent, interview]

A further issue for participants and respondents caring for a disabled child, was concern as they turned 16 years old because they had to move from DLA to PIP and a whole new application was needed.

Single parents

Single parents suffered from misinformation and uncertainty, would not have been able to access their due without help and support, faced fear because of conditionality[2], mental health difficulties because of stigma and financial difficulties because of benefit changes.

Misinformation and uncertainty

Single parents experienced delays in payments that led to financial difficulties and a lack of certainty. They frequently reported that this stemmed from a lack of information or misinformation and guidance from DWP and Job Centre Plus staff.

“When I knew I was moving over from income support to Universal Credit, in the run up, I was asking a lot of questions about it in the Job Centre, and every single time I was getting told ‘I don’t know, I don’t know, I don’t know’… that’s a huge uncertainty when people can’t even tell you what works.”

[Single parent, focus group]

“I’m back and forward to the Job Centre pretty regularly and I would assume that I’m being given all the information and all of the things that I’m supposed to have and that’s not information I got from them.”

[Single parent, focus group]

Need for support

Many single parents noted that third sector organisations were essential to them because of the lack of information and guidance from official channels. Information and active support was also accessed from support networks such as other service users, acquaintances and friends. Without this support, this group reported that they would not have known about eligibility and further, would not have attempted to apply by themselves.

“I’m still getting the medical certificates because I’m still unable to work. I wasn’t told that I could be getting other things on top of this because of my mental health, and I’ve only been advised by the support worker here [third sector organisation] just now that there are other options out there that I could have been getting. They [DWP and JC staff] didn’t tell me the options that they should have told me in the first place. It’s their job to inform me that this is what I could have applied for.”

[Single parent, interview]

“I didn’t know what benefits I could apply for, see until I came to One Parent Families Scotland, I didn’t know anything about any of the benefits I could apply for.… I’ve still got a long-term thing wrong with me and I dinnae know about even applying for PIP and [name of group member] told me to apply for it.”

[Single parent, focus group]

Conditionality and stigma

Single parents were experiencing pressure because of having to look for work in order to access benefits, despite their all encompassing caring responsibilities. This conditionality, they reported was detrimental to their mental health, not least as they constantly felt under suspicion from the DWP and Job Centre Plus staff.

“I’m sorry but I don’t want to be claiming benefits, I don’t want to be living on a certain amount a month, I really, really don’t and I take no pride having to go sign in at the Job Centre, I feel they just must look at you and go ‘come on get your act together’. I’m trying, I really am.”

“I get embarrassed when I am walking into the Job Centre.”

[Single parents, focus group]

For many, experiences with the benefit system involved feelings of fear, embarrassment and stress. Attending the work-focused appointments and carrying out job-search activities were frequently dreaded. Some single parents complied to the conditions without questioning them out of fear of being sanctioned.

“Nobody wants to be on benefits, we all want to work, but there’s nobody to watch the wains…when you go in there [Job Centre], they think you don’t want to work. That’s not how it is, people just have different circumstances. The way they speak to you on the phone is atrocious. I know hundreds of different people are on benefits but going up to the Job Centre for me is a bundle of anxiety…And there’s sanctions. Anything at all, then you’re sanctioned. And the reason we’re sanctioned is because we’ve got the wains. Even though we don’t, because we’ve got all those commitments. If you miss one hour of job searching, you’re sanctioned for like ‘you’ve done 34 hours searching but why haven’t you done 36?’, you’re sanctioned.”

[Single parent, focus group]

A few mentioned that DWP and Job Centre Plus staff did not recognise the difficulties of being a sole carer, attending mandatory appointments and getting a paid job. Further, some highlighted that being unemployed was perceived negatively by the benefit system.

“…one of my work coaches, he just didn’t get it at all. It was a case of, ‘you’ve been unemployed for twelve months, come on woman, you need to learn to juggle.’ That was his words to me. He followed it on with ‘me and my wife juggle, we work it out.’ And I said, there you go, you and your wife. I’m on my own, I don’t have anyone to juggle with. But that was the day I left in tears, because I thought he was going to sanction me. I was providing the proof, I was filling in the book, I was applying for anything that would be suitable in his eyes. I was applying for things I wasn’t even qualified for so I had an extra thing that I could write in my book because it was the fear factor.”

[Single parents, focus group]

Financial hardship due to benefit changes

Respondents and participants that had been transferred from Income Support or other benefits to Universal Credit and other benefit changes faced financial insecurity debt, rent arrears, a need to use foodbanks and get payday loans. The changes mentioned waiting times for the first UC payment, the benefit cap and the ‘bedroom tax’. These difficult economic circumstances had also an impact in their mental health for a few.

“I applied for Universal Credit from ESA last year. It was a nightmare. Just getting paid, the time it took. There was no money available until six weeks or so after my claim. The only support I had was the foodbanks…They give you a loan [advance payment], because they know how your rent arrears will clock up in that space of time while you’re waiting for the money to get sorted. So they gave me a loan, and that loan had to be paid back every month at so much per month as well as deductions from Universal Credit as well, which left me just as bad as what it was before I started claiming in the first place. So it was a bit of a rigmarole.”

[single parent, interview]



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