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YOUNG CARERS: ASSESSMENT AND SERVICES

EXECUTIVE SUMMARY

The Study

The objectives of the study were:

• examine the ways in which young carers come to the attention of voluntary and statutory agencies, and factors inhibiting identification
• identify the ways in which young carers' needs are assessed
• examine approaches to service provision by both statutory and voluntary agencies
• identify approaches that are successful in meeting the social, educational and health needs of young carers
• assess the results of any evaluations of the ways in which services are delivered.

The primary element of the research was a literature review, focusing on published work. This was supplemented by:

• a questionnaire survey of local authorities, health services and relevant voluntary agencies in Scotland
• analysis of documents provided by those agencies
• interviews with a small number of experts (11)

The scope of the study was limited by the time available for carrying it out (2 months). Where possible, the review focussed on documents relating to young carers' issues in Scotland. Inevitably, however, many of the documents reviewed were concerned with carers' issues across the UK and the review concentrated primarily on UK rather than international publications.

Overall observations on previous research and literature

With few exceptions, the literature on young carers has focused on children who assume caring responsibilities with respect to parents, and much less is known about those who assist with the care of siblings, other relatives or non-relatives.

The main topics covered in the literature are:

• arguments for and against the conceptualisation of children who assist with the practical and emotional care of family members as 'young carer'
• research on the experiences and needs of young carers
• discussion of legal entitlements
• advocacy of particular policy and service responses to young caring
• descriptions of service developments, mainly specific young carer projects

Definitions and legal duties

The concept of young carer was initially developed largely in relation to children with a parent who has a physical impairment. In such families the 'young carer' undertakes 'significant' personal care tasks towards the parent and/or carries out other household activities that the parent is not able to do. In keeping with the widening concept of disability in legislation, young caring has been extended to encompass circumstances where parents have a range of issues - physical impairment, chronic or terminal illness, mental health problems and dependency on alcohol or drugs. It has also been recognised that children may take on a caring role with respect to other family members, particularly their brothers, sisters or grandparents. At the same time, it has been recognised (as in the Children (Scotland) Act 1995) that children may need help because they are adversely affected by disability in the family, although this may not entail caring in the sense of looking after someone or the household.

Most definitions recognise that both 'caring' and 'adverse effects' occur along a continuum. A crucial distinction is often made between a sole or primary carer (where the child is the only carer as no adult is available) and supportive or secondary carer (where the child assists an adult). When a child is caring for a sibling, this is nearly always in a supportive role.

A survey of over 2000 young people attending young carers projects found that rather more were girls (57%) than boys (43%) and just over half (54%) lived in lone parent households. Many were aged under 12.

Some writers and certain of our interviewees have challenged either the basis or the usefulness of the concept of young carers. They argue that it undervalues and subverts parental roles and diverts attention from the need to support parents so that children do not have to perform personal assistance tasks.

The legal duties of local authorities to young carers are contained in legislation related to disability, community care and children. This has led to some anomalies and uncertainty related to definition, assessment and service provision. However, the Community care and Health (Scotland) Act 2002 seeks to clarify the position on assessment.

Identification processes

The ways in which agencies identify young carers is affected by the complexities of definition outlined in the previous section. The notion of 'young carers' is not one that came from children themselves, but was created by certain adults who were concerned on behalf of children. Similarly, children and young people have not expressed a demand for services, so active processes are required to identify and locate them. The willingness of children to attend young carer projects indicates that they do accept they have needs to be met, which may be recreational, social or emotional. On the other hand, evidence indicates that most do not like the term or identity of 'young carer'.

Agencies may identify populations of young carers (in order to plan or improve services) or individual young carers to assess their needs and perhaps encourage them to take up a service on offer. Aggregate identification is hampered by definitional difficulties and the varied forms in which agencies hold relevant statistics.

Little is known about how young carers come to the attention of local authorities. The literature includes many statements that adult services tend not to notice or heed children's needs, while children's services usually get involved in extreme cases, where there are child protection concerns. Young carers' Projects usually attract children initially by promoting awareness of the service among social workers, health professionals and teachers. The agency survey showed that, once established, the majority of projects receive self-referrals and referrals by parents.

Both the literature and the survey indicated that a number of Projects have difficulties in acquiring a large number of referrals, which is attributed in part to parents' unwillingness to give consent on account of various inhibiting factors. Research has indicated that children and/or their parents are often reluctant to seek help for a variety of reasons, including a wish for privacy, feelings of stigma and fears about community or professional responses. Others are simply unaware they may get help. It has also been suggested that identification of young carers is inhibited by ignorance among professionals in contact with the families and the views of some professionals that young caring is outside their remit.

Needs assessment

Young carers research and feedback from young people attending Projects has indicated that they have four main needs. These are for:

• information (e.g. about their parent's condition, services)
• individual support or counselling
• practical assistance
• social contacts and recreation

The disability rights perspective, in contrast, emphasises that the main need is to prevent or stop young caring by means of financial, practical and other support to the whole family.

Holistic assessment frameworks have been advocated for use by statutory and voluntary agencies. These promote integrated attention to the child, parenting capacity and the wider environment.

Children living in Scotland who are 'adversely affected' by disability may be assessed as children in need. From September 2002, they will be entitled to request their own assessment under community care legislation. Evidence from England indicates that few young carers (perhaps 10% of those identified by projects) have independent assessments of their needs carried out by local authorities. When this does happen, the children do not usually have a good understanding of the purpose of the assessments, but positive help to the family sometimes results.

Research on sole or primary young carers indicates that not uncommonly their school attendance or performance is affected by their caring role, but there is little evidence of concerted efforts by education authorities or schools to tackle this.

Referral procedures to many Projects are informal and brief, though some have extensive and standard formats. A minority of Projects have developed a protocol for assessment with their local authority. Several use pictorial questionnaire booklets or other tools to aid identification and joint assessment with young people. It appears that, at least in some cases, assessments are service led (i.e. to assess suitability for attendance at a Project) rather than needs led.

Service approaches

In the 1990s, service development was largely based on the principle that children and young people needed and were entitled to have access to a separate, dedicated service away from home. This was sometimes supplemented by support to parents and advocacy. Recently attempts have begun to shift the focus to an integrated 'whole family' approach.

Most information is available about young carers projects, the great majority of which are provided by voluntary organisations. A few are one-off projects developed to meet local needs, but most are run by larger organisations concerned with children, disability or mental health. These include the Princes Royal Trust, National Children's Homes, Barnardo's, the Children's Society and Crossroads. Many Projects have developed in response to local initiatives, so their availability is piecemeal. Few have long-term funding. Access and transport is a significant issue, especially in rural areas. Whereas some Projects in England are well-established, most in Scotland were set up very recently.

Projects normally focus on children and young people, though a minority also involve parents. Some are generic, in that the young caring of service users may arise for any of several reasons or might relate to any household member. Others are specialist, concentrating on particular circumstances, such as children with parents who have a mental health problem or misuse alcohol, or those caring for siblings. Age and other criteria for admission vary widely. Some Projects offer places indefinitely, while others have time limits.

Projects typically provide three kinds of intervention:

• group activities and discussions
• individual counselling or befriending
• advocacy on behalf of the child or family

The majority appear to concentrate on providing opportunities for enjoyable interaction with peers. This can serve as a trust-building basis for access to individual counselling.

Much less information was available in the literature and from the survey about the nature of local authority and health service provision. Evidently the statutory services are sometimes providing services to parents with care needs and the availability of these services will impinge on their children. Commentators have pointed out that inadequate support for parents who are chronically ill or disabled helps create or sustain young caring. Views differ on whether devoting resources to young carers projects is a necessary response to what is perceived as the inevitable shortfall in support to adults or contributes to that deficiency by diverting attention and money. Some local authorities and health services provide funding for young carers projects and individual professionals refer children to the projects. Also a small number have appointed staff or set up their own Projects with a focus on young carers. Direct payments have considerable potential to alleviate the circumstances of families with young carers, but little is known about their impact on children.

Co-operation between agencies has grown, but is still thought by many people to be inadequate. At a national level, young carers projects share ideas through their own network and the Carers National Forum, while at local level some joint initiatives have developed.

Evidence about success

Apart from feedback by service users, little evidence exists about the effectiveness of services that support young carers and their families. A few short-term evaluations of particular projects have been carried out, either internally or by the Young Carers Research Group. Studies have examined satisfaction by key stakeholders, but not assessed outcomes or compared different strategies. Similarly no evidence appears to be available about the impact on young carers of interventions which aim at supporting their parents or siblings.

Young carers projects are generally successful in attracting children and young people, many of whom value the social and recreational activities. Some young people also report how helpful it is to have an independent person they can share their concerns with. Two evaluations in England indicated that planning and service development included little participation by young people, although an audit by NCH in Lanarkshire found that young people's views were obtained and seriously attended to. Several Scottish reports of service user feedback highlight young people's gains in friendships and reduced stress.

Conclusions

There is broad agreement that it is inappropriate for children to assume major responsibility for personal and emotional care or domestic duties, when their parents' capacities to undertake these are restricted. Actual and advocated policy and service responses to situations where this occurs are contested, however. Different approaches entail targeting parents, children and young people, the family as a whole or combinations of these. The differences reflect fundamental divergences in view about such matters as the nature of childhood, families, disability, mental health problems and rights, though some attempts are underway to establish common ground.

The main service development has been the development of projects which mainly offer individual and group activities and support for children and young people outside the home. These are generally enjoyed and valued by the young people who attend, but many young carers have no project near to them, resulting in geographical inequity of access. The continuing existence of many young carers indicates that financial, practical and other services for adults with disabilities or other difficulties are inadequate. There is a lack of co-ordination between voluntary and statutory agencies. Within the latter there appears to poor liaison between adult and children's services and limited co-operation between the various kinds of professionals involved.

Services for young carers are a prime example of the need for concerted efforts by different agencies and professions to develop a shared approach and provide coherent services based on holistic assessments, as promoted by the Department of Health Assessment Framework and the Scottish Executive Action Plan. It seems desirable to have a common strategy at central and local government levels in Scotland to promote a well co-ordinated programme of interventions aimed at reducing the need for children to be sole or major carers, while ensuring that children do have access to separate, confidential support where this is required.

Research is necessary to identify more clearly the spectrum of caring responsibilities undertaken by children within families covering households with and without a parent or child who has a disability. There is also a need for independent evaluations of assessment processes and service provision. It is important to assess the impact of measures such as Direct Payments and practical and respite services for disabled adults and children.

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