Unpaid carers changing the systems that trap them in poverty

This year’s #CarersWeek 2022 theme is about making caring visible, valued and supported. It comes at a time when unpaid carers have had no additional support through the benefits system in England in the face of Covid-19 and the cost of living crisis. It is estimated that unpaid carers across the UK provide care worth £132 billion per year, but more than a million unpaid carers are living in poverty, and more than half are women. It’s simply not right that carers and their families are being pushed into poverty and unable to lead fulfilling and dignified lives, whilst playing a vital role in our society.

Last year JRF, in partnership with London Unemployed Strategies (LUS), a network of claimant advocacy groups in London, embarked on a joint project with the aim of co-designing policy solutions that address poverty and its related issues facing unpaid carers. The carers co-design project (CCDP) team made up of JRF staff and members of LUS who have expertise in unpaid care has carried out expansive evidence gathering and is now developing its policy recommendations. Below are some of the key findings and personal experiences from the group.

• Social security payments are inadequate, making it difficult to achieve an income that can sustain a decent quality of life or cover the cost of living, including the costs of caring, and living with someone who needs support.

The benefits system offers significantly less support than it did in 2010 following cuts to welfare spending, and the proportion of people in receipt of Carer’s Allowance who are in poverty has almost doubled from 16% to 30%. A decade of cuts to welfare spending has had an impact on the ability of carers and their families to live fulfilling lives. However, not all carers are in receipt of Carer’s Allowance or qualify for it.

It is important that those reliant on benefits to support and care for someone are not just given sufficient financial support but financial support that goes beyond that, that allows them to live a fulfilling life. There has to be a decent minimum income for carers. Not caring on the cheap, which exploits carers and takes them for granted. This leads to poor health for carers, that makes no sense at all.

CCDP member with experience of unpaid care

The team found that there are many people who are carers without realising it and go a long time without support, or never access it at all. There is also a further cultural dimension, in that expectations around caring roles in familial relationships in some Black, Asian, and Minority Ethnic (BAME) communities mean that carers can go unidentified, and social stigma around accessing help prevents some from accessing support.

• Not enough good quality, affordable and personalised respite care is available to help carers manage caring responsibilities with work or other personal circumstances, or simply to get enough rest.

Barriers to moving into and staying in work are numerous, and these have been discussed within the CDDP project team. For our team, the most frequently cited issues were lack of suitable respite care and lack of flexible working, observing that sickness and disability are often not static and a person’s care needs often fluctuate. This was not limited solely to the availability of care, but also quality, cost and cultural appropriateness.

• The social security system is difficult to navigate and makes it challenging to combine care with work or deal with the often fluctuating nature of care and employment.

The project team have spoken extensively about the challenge of combining paid employment with their caring responsibilities. A lack of flexible work opportunities and understanding from employers, the social security system and other support agencies combined with limited access to respite care and diminished opportunities to train and upskill were all cited as barriers to accessing and remaining in employment.

Given that unpaid carers are more likely to be working part-time, they are affected by the lower rates of pay that part-time work attracts – for example, they are typically less senior roles, or less well regarded, with a lower hourly rate. This means that they are not only worse off by reducing hours but that their ’full-time equivalent’ pay is likely to be lower. There is a link to the gender pay and pensions gaps too.

CCDP member with experience of unpaid care

The rigidity of hours and earnings thresholds in Carer’s Allowance and the Carer Element of Universal Credit were felt not to support carers into work. The hours threshold for receipt of carers’ social security entitlements was also felt to be too high, and the earnings threshold for Carer’s Allowance too low.

• Systems and services do not respond adequately to complex or overlapping circumstances of disabled carers, are not accessible for people with language barriers or hidden disabilities, and often dismiss or diminish people’s needs or make them feel like they are somehow being dishonest.

Carer’s Assessments fail to meet the needs of disabled and sick carers and do not acknowledge the often-fluctuating nature of care, disability and sickness. Often, this results in them being denied the support and entitlements they need. For example, in Universal Credit the same person cannot claim both the Carer Element and the Limited Capability for Work or Work-Related Activity Element.

Recognition by the DWP that my son has a life-long condition that will not change, that would mean that we do not have to go through what feels like the endless stress of work capability assessments or PIP assessments. The impact of this is never feeling settled, always living in fear of the 'brown envelope'.

CCDP member with experience of unpaid care

Members of the team spoke about how difficult it is to understand what you might be entitled to as an unpaid carer and the interactions between different types of social security payments. If you have language barriers it is impossible and requires support from others in your community, and if you or the person you are caring for has non-visible disabilities you are likely to face further discrimination.

It is time-consuming to access financial support with lengthy forms needed to be completed, accompanied by a significant amount of evidence. Often claims were initially rejected, requiring you to wade through further layers of the social security system to challenge decisions. Once financial support was received, for some people it was dependent on further assessments. This is a significant source of stress and frustration about being unable to access the financial support needed, being forced to choose between options which are unsatisfactory, or the risk of not being able to access the support and the negative impact on health and well-being.

• Services make assumptions and have misconceptions about carers and what they want, for example that BAME carers have large family networks.

Members of the team have shared their experiences of barriers for them and their families accessing appropriate and timely support. There is concern among the team that institutional racism in the healthcare system often means that people from racialised communities receive later diagnoses and poorer treatment, often resulting in worse outcomes, or their conditions go unacknowledged. This has been the experience of some members of the CCDP team and the implications for them and the person they are caring for are serious. Waiting longer for treatment or diagnosis means the responsibility on the carer intensifies and their health and wellbeing deteriorates.

Members of the team also spoke of a cultural stereotype that is frequently used by services that BAME carers have large family networks who can be called upon for care and require less proactive support. BAME unpaid carers are less likely to be receiving practical and financial support with caring and more likely to miss out on accessing support for longer, often as a result of a lack of advice and information and struggling to access culturally appropriate services.

Cultural expectations around the role family members (for example, children) should play in care also act as a barrier to BAME carers in terms of accessing support. Research suggests that BAME carers may care for longer and at higher intensity before accessing support (or may never access it at all) due to such activity being seen as a family responsibility, and departing from this is taboo.

Language also acts as barrier to accessing support. One member of the team spends time supporting women in her community to navigate systems and services as they do not have English as a first language. This was supported by attendees of a roundtable held by the CCDP team underlining the importance of not just offering written information in different languages, but of going out into the community, understanding carers’ needs and making whatever adaptations to services were necessary, for example, incorporating prayer rooms or ensuring that respite opportunities were culturally appropriate.