Implementing the Carers (Equal Opportunities) Act 2004

Duty to inform carers of the right to assessment - Young carers

Key research and policy findings

Practice points

Research and policy

There is widespread agreement that children should not be undertaking regular and substantial caring responsibilities or inappropriate personal care tasks. Local authorities have a responsibility to ensure that the person needing care has appropriate services and this should include help with parenting tasks (7). There is evidence, however, of large numbers of young carers. In the 2001 Census, 175,000 children and young people in the UK were identified as carers (20). The average age of young carers supported by projects in the UK is just 12 years (23,24).

Young carers are:

children and young persons under 18 who provide, or intend to provide, care, assistance or support to another family member. They carry out, often on a regular basis, significant or substantial caring tasks (23).

Problems arise when the level of responsibility taken on by the young person is inappropriate to their age and maturity. Practitioners should be aware that young carers, having taken on roles beyond their years, can present as more mature than they really are. The impact of caring on the young person is an important consideration and could be influenced by a number of factors, such as family circumstances, the age of the young carer, the amount and type of care given and, crucially, whether the cared-for person has adequate statutory or other sources of support. Becker and Dearden (24) offer an analysis of the number of hours spent caring by children of different ages. Findings indicate that 84 per cent of young carers provide 1 to 19 hours of care per week, 9 per cent provide 20 to 49 hours and 7 per cent provide more than 50 hours.

Caring about carers: A national strategy for carers (16) recognises that, while support must be offered to the cared-for person, young people may continue to play a caring role that can have a detrimental effect on them. Even when the care provided is adequate, children may be affected in other ways - for example, by feeling guilty about leaving their parent alone or worrying about their parent's welfare or financial concerns. The national carers' strategy identifies what young carers need:

The framework for the assessment of children in need and their families (25) advocates a holistic family approach to assessment, facilitated by joint working. This framework should be used if it appears that a child is 'in need' under the Children Act 1989. The government's commitment to supporting young carers is evidenced in the Carers' Grant guidance, where it states its objective is to 'support children and young people who are carers in having a break from caring; or fund voluntary organisations to provide breaks directly on the basis of their own assessments'. (26)

Thirty-five per cent of young carers are 16-17 years old (24). This group has needs that differ from those of younger carers, particularly in light of the 2004 Act's requirement to consider training, employment and leisure needs during assessment. There is evidence that young carers are more likely to experience problems with transition into adulthood:

The main factors that influence young people's caring experiences and transitions to adulthood are [thus]: service receipt, family income, the nature of parental illness or disability and family structure (23).

The policy guidance (3) refers to circumstances where it may be appropriate for carers aged 16 or 17 to take on aspects of the caring role - for example, when a parent is terminally ill. Such young carers should be properly supported to ensure that caring is a positive experience for them. Practitioners will need to make carefully considered judgements about the caring tasks to be carried out by young people, but they should not include inappropriate personal care. The aim should be to empower parents and minimise the caring role of the young person in a way that is appropriate to their age. The role of young carers should be acknowledged but not encouraged, and the views of young people should be taken into account.

Identification of young carers can be problematic. Many children live with family members with stigmatised conditions such as mental illness or drug and alcohol problems. In many cases, families fear what professional intervention may lead to if they are identified (23,27). Some families may also have concerns about the stigmatisation of being assessed under children's legislation (27). If a young carer requests an assessment under the 1995 Act (1), the local authority must carry out one. As a matter of good practice, however, and in line with Children Act 1989 guidance, the Framework for the assessment of children in need and their families (25) - see particularly paragraphs 3.61-3.63 - should be used as it provides for a more holistic assessment under the Children Act 1989. The policy guidance (3) states that 'the new obligation to consider a young carer's wish to work or undertake education, training or leisure would still apply,' regardless of the legislation under which they were assessed.

Adult services, in addition to supporting disabled parents, have a key role in identifying young carers, as they will often be the first point of contact. At the point of assessing the cared-for person, adult services must ask whether the person they are assessing has children (8) and, if they do, what impact they feel their disability has on them (27). Some children live with disabled siblings or grandparents and take on some caring responsibilities to support their parents who are the main carers. In the absence of their own parents, other children may live with grandparents who have care needs.

Many young carers have problems at school, including poor educational performance and difficulty fitting in with their peers (23). Such problems may be a consequence of poor attendance at school and the pressure and stress caused by caring responsibilities. Although there has been a gradual decrease in absence from school among young carers since 1995, between 13 per cent of those of primary school age and 27 per cent of those of secondary school age are still experiencing some problems at school (24). In addition, when families include someone with a disability the family income is likely to be lower than average, this may affect the young person's opportunities for further education.

These issues highlight the importance of partnership working between adult and children's services, voluntary sector, young carers' services and education professionals. It is important that practitioners adopt a whole-family approach to the assessment of young carers, and joint working is vital for this to happen. Locally agreed protocols should support joint working and avoid disputes regarding assessment and/or financial responsibility. Although not a requirement, the appointment of a senior lead on young carers - with the authority to make decisions on any disputes - would facilitate seamless service provision.

The majority of support for identified young carers is funded through the local authority and provided by the voluntary sector (23). Available support includes:

The voluntary sector is a valued source of support to many young carers and their families but it should not be relied on as a substitute for adequate support for the cared-for person. No care package should depend on the inappropriate caring role of a child. The information strategy should ensure that practitioners in both adults' and children's services are aware of resources for young carers. It is also important to acknowledge that young carers may not want to be labelled or directed only to specialist young carers' services such as the ones mentioned above. Mainstream resources should be used where appropriate to provide support for young carers.

Ideas from practice

Practice examples are self-reported and have not been evaluated.