Young Carer Grant - interim evaluation: qualitative research (Annex A)

Chapter 6: Barriers to applying for or receiving the grant

Main findings

Young carers and stakeholders identified a lack of awareness of the grant as a major barrier to those eligible to apply. There was a view that Young Carer Grant was not widely known about, and this would especially affect 'hidden carers' who were not engaged with young carer services.

There was a suggestion that the grant could be advertised more, particularly on social media. Stakeholders emphasised the importance of using inclusive language when promoting the grant, in order to reach eligible young people who may not identify as young carers themselves.

Among recipients, there could be some initial reluctance to take up the grant due to how they perceived themselves and their caring role. For example, a perception that other people needed the money more than they did or not wanting their cared-for person to be seen as a 'burden' they had to be compensated for.

Stakeholders highlighted that a lack of consent from parents or the cared-for person could be a barrier. They thought the main reasons for a lack of consent were a fear that Young Carer Grant would affect other family members' benefit entitlements, a fear of social services becoming involved, or a general lack of acceptance of a young persons' carer status. Stakeholders explained that cultural values may mean some minority ethnic families may be less likely to accept or fully understand the term 'young carer' because the word 'carer' does not exist in many community languages.

One non-recipient in this study did not complete their application because of difficulties meeting application deadlines. Stakeholders provided further evidence that difficulties with the application process were a barrier to many other young carers, specifically those living in chaotic households where it is difficult for them to find the evidence they need.

While there was an acknowledgement that there is a limited amount of money, the 'one carer rule' was generally seen as unfair by stakeholders and young carers. There was a suggestion that younger siblings or less confident young carers would be disproportionately disadvantaged as a result of this rule.

There was concern among stakeholders that the eligibility criteria for receiving Young Carer Grant was excluding too many young carers with significant caring responsibilities. These concerns centred predominantly on the requirement that the cared-for person be in receipt of particular benefits.

It is important to note that the young carers who took part in this research were mainly recipients of Young Carer Grant so had either not faced any significant barriers or had overcome them. Therefore, much of the following evidence is based on feedback from stakeholders who work with young carers.

Awareness of the grant

Young carers and stakeholders identified a lack of awareness of the grant as a major barrier to those eligible to apply. There was a view that Young Carer Grant was not widely known or generally discussed, which would cause young carers to miss out.

I could have applied for it when I was 16 but I had no clue about it, I had no clue that I was a young carer. Aged 18, caring for sibling

Stakeholders highlighted that a lack of awareness was a particular barrier for 'hidden carers' who are not engaged with support services, as they are much less likely to find out about the grant. The importance of young carer services in informing young carers about the grant was supported in evidence from young carers, the majority of which had found out about the grant in this way^[17].

There was also a view among stakeholders that 'hidden carers' were less likely to identify as young carers and therefore less likely to apply for Young Carer Grant, even if they heard about it. There was some acknowledgement of this among young carers too:

I feel like a lot of people that I know wouldn't think that they're a young carer but they do more work than some of the people that [use my young carer support service] and they had no clue that they're a young carer. Aged 17, caring for sibling

When asked what would help to raise awareness of the grant, young carers and stakeholders both mentioned improved advertising, specifically on social media, as there was a perception that young people spend a lot of time on social media platforms. There was also a strong appetite for more promotion in schools.

Stakeholders emphasised the importance of choosing inclusive language while promoting Young Carer Grant to ensure it reached as many eligible carers as possible. They indicated that there will be eligible young carers who do not identify with this label, meaning it may be more effective to use more general terms when promoting the grant such as focusing on the sort of tasks young carers might carry out.

Even when they were aware of the grant, a lack of awareness of the details could lead to young carers making false assumptions about whether or not they would be eligible, which could be a barrier to applying. For example, occasionally there was an assumption that 18 year olds would not be eligible.

I think at first it was mostly my age that put me off, because at the time I was 17 when I applied. So, I got it when I was 17 and I'm now 18, and sometimes I feel like once you're 18 it's kind of like […] you're on your own now. Aged 18, caring for mother

How Young Carer Grant fits with young carers' identity

Among recipients, there could be some initial reluctance to take up the grant due to how they perceived themselves and their caring role and how the grant fits into this.

One view expressed by some young carers was that they were not the kind of person who needed or deserved the money. For example, one participant explained that she originally did not want Young Carer Grant because she did not want to receive 'charity' (before she was later persuaded to apply by a young carer service worker). There was also an assumption that other people would be worse off and in more need of the grant:

I thought I was just like a usual person who wouldn't need it, I thought it was for more severe situations. Aged 18, caring for siblings

There was little evidence of stigma as a barrier to applying for Young Carer Grant. One participant pointed out that this was partly because the grant is paid discreetly and directly into a nominated bank account, so only her and her mother (who she cared for) knew she had applied for it. However, one recipient believed other people may judge her negatively for applying for the grant, because she was not struggling significantly financially.

There was also a (more exceptional) view that receiving Young Carer Grant would impact on how recipients saw themselves and their relationship with the person they cared for. For example, one participant was initially uncomfortable with receiving compensation for caring for her brother because it undermined the fact that she was happy to do it regardless. Furthermore, she was worried about how receiving the grant would change her brother's perception of her and that it would make him feel like more of a burden if he knew she was being 'paid' to look after him (although this did not end up being the case).

I felt like if he knew that I was taking money for pretty much being his big sister, he'd kind of feel a bit rubbish. Aged 18, caring for sibling

Lack of parental support

Another barrier to applying for Young Carer Grant discussed by stakeholders was the need for the cared-for person to be involved in the application process. This means eligible young carers are dependent on adult support to apply for Young Carer Grant which is not always given.

Stakeholders had experience working with families who refused to allow young carers to apply for the grant because they were fearful that it would prevent them from receiving other benefits, or even accessing foodbanks. There was a view among stakeholders that greater reassurances were needed to make it clear that Young Carer Grant would not impact on eligibility for other benefits.

Similarly, stakeholders were aware of families who had a fear of social services in general and thought that applying for Young Carer Grant might lead to social services involvement. It was suggested that this was more common in minority ethnic communities and thus a greater barrier to minority ethnic young carers.

Stakeholders mentioned that an alternative reason that parents or guardians refuse to accept a young person's carer status is because they believe providing this level of support to family members is normal and expected. This can be a sensitive and personal issue, as viewing a young person as a carer may make the cared-for person feel like a burden.

Stakeholders explained that cultural values play an important role here, and some minority ethnic young carers may feel a moral obligation to look after family members. In addition, some minority ethnic families may be less likely to accept or fully understand the term 'young carer' because the word 'carer' does not exist in many community languages. Further, there can be a stigma attached to someone needing to be a young carer.

This was supported by the experiences of a Scottish Asian recipient who felt that identifying as a young carer could be a particular issue among the Asian community. She believed there was a degree of stigma surrounding seeking help from outside the family because there is an expectation that family members will look after each other. This can make young people feel guilty for applying for the grant.

Stakeholders highlighted a general need to provide culturally sensitive services and information, including on Young Carer Grant.

Application process

The young carers who took part in this study were predominantly recipients of the grant and had experienced few difficulties with the application process. However, one non-recipient explained that the reason they had not completed their application was because of not being able to provide the required evidence on time. He needed a copy of his bank statement, but by the time he recieved this in the post, it was past the deadline. He suggested that had he had a bit more time to submit the evidence, he would have done so.

Another non-recipient explained that she had not yet applied for the grant because she was waiting for her mother to be well enough to provide her with support and help her complete the application process.

While there was a view among stakeholders that the application form itself was straightforward to understand, there was a suggestion that it could be simplified further. It was noted that the current wording is similar to the Carers Allowance form, but Young Carer Grant is a different kind of benefit and could be less fomal and more 'young person friendly'. Stakeholders highlighted that it was important to make the grant as accessible as possible for those with learning difficulties or those for whom English is not their first language.

There was also some concern that the wording and layout of the form could lead to a misconception that young carers have to provide information that is actually optional, such as their national insurance number. As this information can be difficult for young carers to find, it may put them off completing their application. This would especially affect those living in a chaotic household where parents may not be able to help them. There was a suggestion that it should be emphasised more in the application from which information is optional.

Stakholders were aware of young carers who had not successfully completed their applications for the grant due to finding the form too long and difficult. They referenced feedback from young carer coordinators in schools that the form "looked like a big job" and felt that if it could be made any shorter that would make it easier for young carers to apply.

There was a percpetion that the fear of being turned down and having their carer status undermined may put off some young carers from applying.

'One carer rule'

One of the requirements of the Young Carer Grant is that only one young carer can receive the grant in respect of any one cared-for person, referred to as the 'one carer rule'. Although none of the participants in this study had missed out on the grant due to this rule, they raised concerns that it was unfair to carers who may still have a demanding care role, despite sharing responsibility with another young carer.

One recipient explained that the 'one carer rule' would have been a barrier for her, had her brother not agreed to let her apply instead of him because he had a job and more money than she did. Although she believed that he did not harbour any resentment because of this, she still felt that it was not fair for her brother to be excluded from the grant, as he had caring responsibilites too.

[My brother] was okay with it, he didn't really mind to be honest, he knew I didn't have any money and I needed it […] It's not affected me, but my brother probably, it's not really fair, because he has got to take on responsibilities as well. Aged 18, caring for mother

There was a view that the 'one carer rule' may disproportionately disadvantage younger carers who may have less confidence or experience in applying for financial support than their older counterparts, or whose older siblings have already established a claim to the grant.

I don't think it is fair that only [my friend] should get the grant, because his sister [aged 16] does a lot of work too herself, and it's almost discriminatory because she doesn't get anything and she is working her butt off, and she is just a little kid [...] it is easier for us [as older carers] to go through an application because we have applied to college or applied for funding, but like, you know, it is a bit of a barrier for the younger ones. Aged 18, caring for mother

This view was backed up by stakeholders, who highlighted that this rule favours older or more confident young carers and this does not always correlate with those who are most impacted by their caring role or those who take on the majority of caring resposibilities. In fact, stakeholders mentioned that younger siblings may spend more time caring, as older siblings begin to gain more independence and potentially spend more time out of the house.

That's basically whoever gets there first. We've had incidences where the more confident or dominant sibling has gone for it. In an ideal world they would share but it doesn't always work that way. It's too restrictive. Stakeholder

Stakeholders also described ways in which the 'one carer rule' could have a negative affect on those who were deemed ineligible for Young Carer Grant because of it.

There was a concern that the 'one carer rule' could affect the relationship between young carers who were affected by it, and that this had to be handled carefully in order to avoid causing resentment.

It's a tricky one. We've got two brothers. One provides more support than the other. One is 17 and a bit and the other is coming up for 16. They know the older brother gets it. We've suggested splitting it between them." Stakeholder

There was some evidence that unequal treatment of young carers sharing caring responsibilities could be a prohibitive factor in itself. One young carer explained that one of the main reasons she hadn't already applied for the grant was that she felt uncomfortable about the idea of receiving money if her sister was unable to. Although, in this case, her sister was ineligble because she was too young rather than because of the 'one carer rule', it does point to a concern that would also apply to that rule.

Interviewer: What's the main reason that you haven't applied for the Young Carer Grant so far?^[18]

Young carer: Well my sister's also a young carer so I was kind of thinking about that. She's younger and she has to be like a certain age or something. So I thought it was a bit unfair, because she does the same amount of jobs. Aged 17, caring for mother

There was a view among stakeholders that the 'one carer rule' can negatively affect young carers' sense of recognition or their perception of their identity as a young carer. For example, a young carer who misses out on the grant for this reason may feel less valued (possibly less valued than they felt before they were aware of the grant) as a result. This could lead them to believe they are less of a young carer than the person who successfully applied for the grant, or question their young carer status entirely. Reduced confidence in their carer status can have negative consequences for young carers such as discouraging them for applying for support as a carer in the future.

By contrast, the 'one carer rule' may indirectly put more pressure on the recipient of the grant. For example, they may feel they are now percieved as the 'main carer' and that they have to do more or take on the majority of caring responsibilities to justify the fact that they received money for their caring role. While there was an acknowledgement by some stakeholders that there are cases where one young carer is clearly the 'main carer' in a shared caring role, it was felt that this was not enough to justify the negative impacts of the 'one carer rule'.

There was a view that the time young carers spend caring is enough to determine their eligibility and there should be more of a focus on this instead of how many young carers are sharing responsibility to distribute the grant in a more equitable way.

Overall, there was a sense among stakeholders that 'one carer rule' limited the impact of the grant in achieving its aims, particularly that of greater recognition for young carers, and that all young carers providing 16+ hours of care should receive the grant.

Eligibility

There was concern among stakeholders that the eligibility criteria for receiving Young Carer Grant was excluding too many young carers with significant caring responsibilities. The number of successful applications stakeholders were aware of varied, with one stakeholder reporting that none of the young carers on their caseload had been eligible.

Overall we've only had one successful application. That speaks volumes to the success of this grant. Stakeholder

These concerns centred predominantly on the requirement that the cared-for person be in receipt of particular benefits. Stakeholders highlighted that benefits may not always be a reliable measure of how much somebody relies on support from a young carer. Young carers who are typically excluded because the cared-for person is not on qualifying benefits include those caring for:

• people with mental health issues but ineligible for benefits
• people with undiagnosed mental health issues
• people with substance misuse issues
• or people who require high levels of emotional support

There was a view that the benefits requirement could present a particular barrier to minority ethnic young carers, as people in these communities can be less likely to access this kind of disability support. There was a suggestion that more culturally appropriate and targeted services would help tackle some of these underlying barriers.

Even in cases where the cared-for person is in receipt of qualifying benefits, there was a concern among stakeholders that this requirement could feel to the young person that they were having to prove they were a young carer, which can be frustrating, particularly if they have already had their caring status verified by young carer organisations in order to access other support.

…having to prove their carer status […] is in some ways demeaning. This is their lived, daily experience. All young people who access our respite service are assessed for their entitlement, therefore their carer status has already been verified but this is an extra level where they have to prove themselves and some just don't have the self-belief, the time or the support to do this. Stakeholder

Stakeholders were generally supportive of the age criteria. However, there was a suggestion that young adult carers in full-time education would benefit from receiving Young Carer Grant as they would not be eligible for Carer's Allowance. This was echoed by a recipient who had just started university and felt it was unfair that when she was 19 she would not qualify as she would be in just as much (if not more) need of it. There was a view that it is particularly important to support young adult carers in this situation to encourage young carers to go onto further education and take up opportunities which are the norm for their non-caring peers.

Stakeholders were typically supportive of the criteria that requires young carers to be providing 16 hours or more of care a week on average, while acknowledging that it is not a perfect measure of how impacted a young person may be as a result of caring responsibilites.

There was a suggestion among stakeholders that it may be beneficial for young carer services to have more of a role in determining eligibility for Young Carer Grant, as they will have a better understanding of which young carers take on the most responsibility and who would benefit the most from this financial support.