Family carers accessing benefits and support: Which bespoke provisions are useful, and which could be universalised?


Family carers are people of any age who regularly provide practical, emotional and organisational care and assistance to long term sick and disabled family members. This article focusses on young adult carers, caring for people with physical conditions or learning disabilities, but much of the analysis applies equally to any working age carer, and also to the carers of people with mental health problems. It discusses the advantages and disadvantages of young adult carers being treated as a tightly defined category for service access and benefit purposes.


In the 1970s, Invalid Care Allowance (ICA) was designed for ‘spinster daughters’ giving up work entirely to care for their ageing parents. A small earnings disregard (£123 at the time of writing, up from £50 in 1999) was added in the 1980s to allow some flexibility. The National Carers Strategy of 1999 aimed to expand and focus all services and support for carers with the aim of improving their current lives and long-term life prospects. As part of this strategy, the ICA was renamed Carers Allowance and extended to allow an eight-week continuation of payments following the death of the cared for person (see note three). However, despite these provisions, young carers have continued to face difficulties getting their needs taken seriously by teachers, and young adult carers have remained one of the most socially excluded groups in society. [1]

Carers’ Support Services

Carers’ services fall into two categories:

  • the tailoring of care packages, to ensure that the caring role is doable for a particular carer, and does not impinge on the carer’s own physical, mental and social needs, and
  • direct support for carers to meet their additional needs for peer support, bespoke training and leisure opportunities, advice, guidance and counselling.

The first type of service is vastly underused, with the result that only a ‘tiny minority’ of carers have any contact with social services. [2]

The second type of service is mostly run by the voluntary sector and is much better utilised. Such services benefit from being able to set their own definitions and thresholds in terms of who counts as a ‘carer’. This allows voluntary sector services to include many people who would not strictly identify themselves as carers (e.g. people accompanying disabled family members to doctors’ surgeries, and children in need of support because of the emotional impact of disability in the family), [3] and avoids the challenge of distinguishing between hours spent caring and hours spent associating as a family.

Carers Allowance

It is almost universally recognised that people caring for a relative for more than 35 hours a week on average cannot be expected to look for paid work, given that the hours of required care in a given week will often greatly exceed 35 hours, and that caring can take a high physical toll on the carers’ health. [4] However, the converse situation is also well recognised: there will be times when carers feel able and willing to undertake paid work. Carers’ training needs and aspirations for the future also need to be taken into account. The highly bureaucratic nature of Carers Allowance (restricting claimants to 22 hours study and £123 a week earnings) is well known to be a major barrier to employment and training, specifically because of the ‘cliff edge effect’ of losing the entire allowance [5] if the carers’ earnings increase even slightly over £123. It has also been noted that not enough carers know that they are eligible for Carers Allowance. [6] The Carer Element of Universal Credit is more flexible as regards earnings from employment, but suffers from the same flaws as the rest of the Universal Credit system (for instance, the claimant being paid between five and nine weeks in arrears); and carers in full time education are still ineligible. [7]

Members of Parliament have tried to address these issues via an Early Day Motion calling for Carers Allowance to be paid unconditionally to carers in the same way that Child Benefit is paid to all parents of children under 18. [8] However, even this step would not take into account the complexity of the decision to take on a major caring role in situations where there are other options (e.g. other available family members). Nor would it provide long term financial help to claimants whose caring role ends because the cared for person has wholly or partially recovered.

Many young adult carers (and some under 16s) already fit more than 35 hours around working and/or studying, without claiming Carers Allowance. Nevertheless, one of the few in-depth studies on this topic [9] found that becoming a Carers Allowance claimant at age 16 is likely to involve a major increase in caring hours, as hours at school are replaced by yet more caring tasks. Only three out of the thirteen young adult carers in the study that we have undertaken were claiming carers payments, and of these, two were in time limited roles (e.g. caring for someone with a terminal illness), where they could prepare to move on to other things entirely at the end of their caring role. In contrast, people working with young carers have described cases where the cared for person is expected to continually need care for decades to come, and the young carer (or their families on their behalf) decides to indefinitely forego any type of part time study or work option from age 16 and subsist entirely on Carers Allowance:

If they discover you can get a bit of money to do that, ‘ah well there you are, I don’t have to go into training and stuff!’. (Young Carers Worker 1).

He decided he would go to college, his mam first said he couldn’t, he would have to get Carer’s Allowance (Young Carers Worker 2).

Meanwhile young adult carers who worked or studied full time without ever claiming carers payments were nevertheless struggling both financially and in terms of time:

I only get £600 a month! … I don’t get a penny for doing what I do for my mum … but I’m doing a second job, I just don’t get paid and taxed … I would have to work 4 hours just to get an hour of care for each of them … [if I gave up my outside job] but yes I’d get 20p an hour! (Young Carer in near full-time employment, aged 19 at time of interview).

The above case shows that:

  1. a lack of money to pay for necessary extras can make it difficult for carers to maintain a job outside the home, and
  2. the option of getting Carers Allowance while not working outside of the home is not considered fair recompense for a long-term caring role.

Looking to the future

Having analysed the current problem, I shall now propose a possible solution which will help both carers and cared for people expand their life options. For carers, there is a possible ‘best of both worlds’ scenario, if carers, alongside every other British resident adult, were able to receive a Citizen’s Basic Income, unconditionally, to the same value as the current Carers Allowance, and were also be able to claim casual or one-off payments for distinct and onerous care tasks (for instance, showering the cared for person each morning, or filling in a cognitively disabled person’s financial paper work). The collective fund for the one-off payments in each area could come from government, but be allocated to carers by a carers’ charity, in whichever way the charity saw fit (indeed, one charity based young carers’ worker suggested precisely such a ‘sliding scale of the contribution that they make’ – see note 8). This would allow the carer complete flexibility to reduce or give up their caring role entirely, if a job or study opportunity came along and other care options were available. It would also remove the barriers for those continuing in a caring role but wanting to work/study alongside it in order to guarantee subsistence in the event that the cared for person recovered. But it would still encourage the types of entrepreneurial behaviour that have been observed in carers who regard caring as a job. [10] The only group that could potentially face more bureaucracy rather than less under the above proposal would be people claiming the Carer Element of Universal Credit, which can be worth as much as £156.45, as compared to the proposed Citizen’s Basic Income of £123. This group would have to claim at least £33.35 in one-off payments per week, or increase their earnings from employment, in order to maintain their current income.

The establishment of a Citizen’s Basic Income would also mean that the cared for person would also see a lessening of barriers to their life choices. The think tank Demos has already suggested that responsibility for helping disabled people into work should be handed from the DWP to another government department, [11] and I would also suggest that responsibility for handling payments for the additional costs of living with a disability should also be handed from the DWP to another department. Disabled people could have a reliable source of subsistence through the Citizen’s Basic Income, regardless of changes in their condition, and regardless of any decision to try work, study, leisure, or volunteering. This would in turn further benefit carers, who currently experience a great deal of stress when the cared for person moves in and out of work, and is constantly forced to re-navigate the benefit system, particularly if the cared for person has a cognitive impairment which leaves them unable to apply for benefits without the carer’s support. [12]


The term ‘carer’ remains useful for the purpose of focussing service funding on emotionally and physically involved family members of disabled people, and a non-work-conditional subsistence payment of some kind is essential for family members providing substantial hours of care. The 2009 Early Day Motion would go some way to alleviating the money problems of carers in near full-time employment and making their working lives more sustainable. However, under the EDM proposed scheme, access would still require that one family member continually provide a specified amount of care. The consensus of evidence and opinion is that this specification is a barrier to carers’ activities outside of the home, and reduces take up by intended beneficiaries. A layer of unconditional income for both the carer and the cared for person would begin to alleviate the difficulties.


[1] Becker, F., & Becker, S. (2008). Young adult carers in the UK: Experiences, needs and services for carers aged 16-24. London: Princess Royal Trust for Carers.

Sempik, J., & Becker, S. (2013). Young adult carers at school: Experiences and perceptions of caring and education. London: Carers Trust.


[3] Olsen, R., & Clarke, H. (2003). Parenting and disability: disabled parents’ experiences of raising children. Bristol: The Policy Press.

Princess, A. (1999). Reaching out to carers. Nursing Standard (through 2013), 13(24), 25.






[9] Heyman, A., & Heyman, B. (2013). ‘The sooner you can change their life course the better’: The time-framing of risks in relationship to being a young carer. Health, risk & society, 15(6-7), 561-579 – a study of 13 young carers and 10 young carers workers.

[10] Heyman, A. (2018). What do young adult carers learn through supporting family members? Extending the affirmation model. Disability & Society, 33(8), 1191-1211.

Hamilton, M.G., & Adamson, E. (2013). Bounded agency in young carers’ lifecourse-stage domains and transitions. Journal of Youth Studies, 16(1), 101-117.


[12] Beyer, S., Grove, B., Schneider, J., Simons, K., Williams, V., Heyman, A., Swift, P., & Krijnen-Kemp, E. (2004) Working lives: The role of day centres in supporting people with learning disabilities into employment, London: Corporate Document Services (No. 2003).


Anna Heyman currently works at the Newcastle Business School, Northumbria University, doing Quantitative and Qualitative Programme Evaluation research.