SCIE Practice guide 5: Implementing the Carers (Equal Opportunities) Act 2004

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

Key research and policy findings

• Young carers are largely hidden and it is therefore very difficult to give accurate figures about their numbers. In the 2001 Census 175,000 children and young people in the UK were identified as carers (20).
• Young carers are being increasingly recognised in government policy.
• The Home Office report Hidden harm (21) estimates that, in the UK, there are between 250,000 and 350,000 children of problem drug users. These children are not necessarily carers, but many may be taking on responsibilities that are disproportionate to their age.
• Being a young carer can have detrimental effects on young people, including problems at school, health problems, emotional difficulties, isolation, lack of time for leisure, feeling different, pressure from keeping family problems a secret, problems with transition to adulthood, lack of recognition and feeling they are not being listened to (22,23).
• 27 per cent of carers of secondary school age experience some problems at school (24).

Practice points

• Recognise that, although young people should not have caring responsibilities that are inappropriate to their age, some do and will still need support.
• Ensure that the multi-agency strategy addresses the needs of young carers and, where possible, is linked to the Children and Young People's Plan for your area.
• Have in place a protocol, shared between adults and children's services, for identifying and assessing young carers
• Consider whether the young carer is a 'child in need' under the Children Act 1989.
• Ensure that all staff are aware of procedures for reporting child protection concerns.
• Adopt a whole-family perspective, working jointly with statutory services for children and adults, voluntary services, education and (for children of 13 years and older) Connexions.
• Ensure that all assessments of adults include a check to find out if there are children in the family who either take on, or are at risk of taking on, a caring role.
• In line with fair access to care services (FACS) guidance, ensure that adult services support disabled people in their parenting role.
• Ensure that the authority has a senior lead on young carers to resolve promptly disputes between adults' and children's services.
• Offer welfare rights assessments to 16- and 17-year-old carers.
• Through the information strategy, ensure that young carers and practitioners have information on sources of support. Some information about support is available on the Young Carers Initiative website.

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:

• recognition of their role
• information about the support available to them
• support with caring tasks
• emotional support - especially someone whom they can talk to about their feelings. (16)

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:

• breaks and activities
• evening clubs
• access to information and advice
• prevention work with families
• mentoring.

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.

• North Yorkshire County Council has developed an assessment form with young carers that is user friendly and may be used to assist in the assessment process.
• Young carers in Kent have developed their own website which offers information to other young carers. They have also produced a DVD to raise awareness in schools about the issues facing them.
• The Princess Royal Trust for Carers has produced a document (71kb PDF) to assist with the implementation of the five Every Child Matters outcomes. The paper is broken down into the key judgements most relevant to young carers taken from 'Inspection of children's services: key judgements and illustrative evidence'.  
• The Princess Royal Trust for Carers offers an exemplar protocol for local authority joint assessment and support for young carers and their families: Download protocol.
• Further information for young carers, their families and professionals is available from:
  • Children's Society's Young Carers Initiative
  • Princess Royal Trust for Carers' YCnet
  • Disabled Parents Network
  • Action for Carers Surrey
  • Common Assessment Framework (CAF), a national, standardised approach to assessing children and young people.