3. Income from Social Security and Benefits in Kind
3.1 Targeted reach of benefits
Social security in Scotland is delivered by two different bodies. Reserved benefits are delivered by the UK Government's Department for Work and Pensions (DWP), and aspects of social security devolved to the Scottish Government in 2016 are delivered by Social Security Scotland. Social Security Scotland already delivers some benefits important for low-income disabled families, including the Scottish Child Payment and Carer's Allowance Supplement. In late 2021 and 2022 they will begin delivering disability payments, which are non means-tested benefits, designed to help with the extra costs of living with a long-term health condition or disability, such as Child Disability Payment (to replace Disability Living Allowance (DLA) Child) and Adult Disability Payment (to replace Personal Independence Payment – PIP). Carer's Allowance, a non-means-tested benefit to provide financial support for people less able to work due to caring responsibilities, will also be replaced by a Scottish benefit in coming years (currently known as Scottish Carer's Assistance).
The UK Government retains responsibility for key income-related benefits, such as Employment and Support Allowance (ESA), Jobseekers Allowance (JSA), housing benefit and Universal Credit, which are means-tested.
Due to both being more likely to be on low incomes and eligibility for benefits specifically for disabled people, families with a disabled member are disproportionally impacted by cuts or changes to eligibility criteria in benefits or support services. Additionally, some disabled people struggle with the 'in-between' space between being able to earn an adequate income from employment, and being unable to work at all due to impairments. This is particularly difficult with health conditions that fluctuate.
When the UK Government began to replace DLA for working age people with PIP in 2013, changes to the structure of the benefit and eligibility criteria excluded some individuals, who no longer qualified under the new rules. Whilst the Scottish Government has said that it does not plan to make substantive changes to the eligibility criteria for these new benefits, it will make the application process easier and more inclusive (including providing digital applications), provide pre-application advice and support, start by assuming that the client has provided an accurate account of how their condition impacts on them, provide 'rolling awards' with no fixed end date, and for Adult Disability Payment, replace face-to-face assessments with consultations only if there is no other way to gather the information needed to make a decision. Work is also ongoing to consider how Scottish Carer's Assistance could work better for carers. The Scottish Government is committed to providing additional support to people caring for more than one disabled child, and considering how extra support could also be provided to those caring for more than one disabled person of any age.
3.2 Value of benefits
Disability benefits are designed to offset additional costs that disabled people face. For some people they seem to fulfil this intention and for many, without these benefits they would not be able to meet their financial commitments.
"It [DLA] helps pay for the extra things that we need for the boys."
However it seems that often disability benefits instead supplement insufficient mainstream income in paying for other essentials. 
Most of our research participants received benefits to supplement or make up the main portion of their income (or had done in the past) – both specific disability benefits and others designed to help with living costs. These were mainly benefits currently delivered by DWP, such as Universal Credit, ESA, DLA and PIP. When asked about whether these benefits were sufficient, responses differed, but many felt that they should either be increased or found it stressful because they fluctuated.
"[Benefits] weren't enough to live off of. I was constantly having to go to family to ask for a lend or a bit of help. I had to go to my mum's house to get food from her."
"I don't think I get enough. I don't think the ESA and the UC are enough. Because I've struggled over the last couple of years, especially when I wasn't working that was then I really started to struggle with my rent and things."
3.3 Take-up of benefits
In the period December 2019 to May 2020, 18% of those who applied to Social Security Scotland for Best Start Grant and/or Best Start Foods, Funeral Support Payment, and Young Carer Grant had a physical or mental health condition or illness lasting or expected to last 12 months or more. Approval rates were higher amongst people with a long-term condition (69% vs 63% for applicants without).
We are not currently able to accurately measure take-up of disability benefits, because existing data is not sufficient to robustly estimate the number of people who are eligible but do not apply. However, Scottish Government has published a Benefit Take-up Strategy to ensure that people in Scotland receive the benefits that they are entitled to, with a second strategy to be published in October 2021.
We do know that as of August 2020, over half a million people in Scotland (565,754) were entitled to either PIP, DLA or Attendance Allowance. This was just over 10% of the population. Just under a third of PIP/DLA/AA recipients also received each of Housing Benefit, Employment and Support Allowance, and Incapacity Benefit.
Many of the families we interviewed found the process of applying for reserved social security to be fairly easy and straightforward, particularly with support from frontline advisers including at job centres and housing partnerships. This was often contrary to their expectations.
"It was more straightforward and people were more helpful than I expected. Every time I spoke to the agency, they were kind. That was a surprise. The process was better than I thought, but nevertheless we still didn't want to be there."
However, for many individuals, the UK social security system causes stress and anxiety, with some people who are eligible for benefits deciding not to apply or appeal decisions as a result. Many find that there is a lack of advice and support.
"It's quite confusing because they expect you to know how the benefits system works, so people will say to you, 'do you get this?', and you say, well what's that, how do I claim it, and then you put a claim in and you can get it but then you have to deduct it from something else so it wasn't worth all the rigmarole."
"I actually found it [availability of DLA] out from a hairdresser that their child themselves had [the same condition], and I had no idea that it was available, the hospital and nurses no-one mentioned it. It was just by chance that I found out about it. I think when she was diagnosed and all the info you get I think there could maybe have been something there from the people at the time, the diagnosis team."
Many people find the applications process complex, inflexible or unsuitable, with requirements for re-assessments even for unchanging conditions.
"That always terrifies me when it comes to the end of the period and we have to reapply. I stress for months waiting to see if we are going to get it because that affects everything. It affects Carer's Allowance and everything. It's everything together that means that we're fine and we get along fine but with only my husband's wage I don't know if we would manage. That's one of the things that does concern me and worry me every time it comes up… sometimes they give it for two years. A disability charity thing told me about this person and he came out and helped me with the forms and the middle son got it for five years. For the wee one it's always just two years at a time that they give. Although his conditions are never going to change."
"What I don't understand is why we have to reapply all the time for something he's never going to get rid of. Just because he's a bit better now … How can an autism diagnosis, it's never going to get better, the needs are always going to be different but he's always going to need taxis and things."
There is also a lack of trust in the system, including concerns that assessors do not have sufficient knowledge of individual conditions to make an accurate assessment.
"At times it can be a bit degrading. You feel like you're being judged by the person that's doing the face-to-face assessment. You're telling them things and being a certain way and they are putting the complete opposite. I have major problems with what they are saying about me at my assessment but I got something and I didn't want to complain in case they took it away."
"[assessors for Personal Independence Payment] ask you to come for a visit because they don't believe what's on your medical notes, and [my pain condition] isn't a disability you can see."
Barriers are different for those with different impairments. For example, barriers for autistic people include lack of clear and flexible communication options, including required face-to-face and phone interaction and complicated forms with ambiguous questions, and negative sensory environments in benefits offices and assessment centres.
The Scottish Government is making a number of changes in response to these concerns, as set out in section 3.1 and further detailed in its published position papers.