Scottish Government

YOUNG CARERS: ASSESSMENT AND SERVICES

Chapter 1: Introduction

Introduction

During the 1990s young carers became identified as a significant group of people in need of support from social care services. They represent part of a wider group of children and young people affected by disability in their families. The threshold between those with and without major caring responsibilities is not clear cut, while the degree to which domestic and caring tasks are shared with other adults and children in the family is quite variable (Banks et al forthcoming).

In addition, there have been challenges to the concept of young carers from those who believe that the 'young carers industry' has distracted attention from disabled parents in need of services. Rather than supporting children and young people in carrying out inappropriate tasks, it is suggested that there should be a new emphasis on inter-dependence within families, so that services are delivered to meet the needs of both adults and children. Sometimes, these disputes have been described in terms of fundamental tensions between children's rights and a disability rights perspectives. In this introduction to the review of the literature, we first summarise the aims and objectives of the literature review, then summarise the legal background underpinning the rights of young carers and subsequently, we describe the methods employed in the present review.

Aims and objectives

The Scottish Executive commissioned this literature review. The overall aim was to provide a comprehensive summary of existing knowledge of how young carers are identified and how their needs are assessed and met. Therefore the review largely concentrated on the interaction between young carers and their families on the one hand and service agencies on the other. Understanding the needs of young carers was an important context for the review, but was not the primary focus.

The specific objectives were to:

• 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.

Policy and Legislative Underpinning of the Rights of Young Carers in Scotland

In the 1990s, a dramatic transformation took place in awareness and perceptions about children assisting disabled parents and other family members. They came to be known as 'young carers', reflecting the wider trend towards raising the profile of informal carers. Within ten years young carers moved from being hidden and in need of a service to being a prominent group in policy documents and actively sought out by a significant but patchily available set of services set up to identity them and cater for their needs. The initial impetus for this development came largely come from researchers and voluntary organisations. Both statute and statutory provision responded, with the carers' strategies of the UK Government and Scottish Executive including a specific focus on young carers. However, opinions remain divided on how best to assist young carers and even whether this is a useful term (Olsen 2000; Banks et al 2001).

Current legislation in Scotland seeks to ensure that young carers have a right to assessment of needs, a right to provision of services to meet these needs and a right to express their views about important decisions affecting themselves and their families. Young carers' rights and the duties of local authorities are dealt with through both carers legislation and children's legislation. In addition, disabled adults have rights to assessment and service provision which should take account of their responsibilities as parents. In the following paragraphs, we summarise the legislative underpinning of young carers rights, drawing extensively on the work of Professor Kathleen Marshall.

Section 8 of the Disabled Persons (Services, Consultation and Representation) Act 1986 states that a local authority, when deciding upon a disabled person's need for services, must take the carer's ability to care into account. The Carers (Recognition and Services) Act 1995 was intended to give all young people a right to an assessment of their ability to provide care. The results of that assessment should be taken into account when the local authority is deciding to provide care. Scottish Office guidance on the implementation of this Act said that young carers under the age of 16 had no such right because they did not possess the legal capacity to ask for an assessment. This anomaly is being ironed out by the Community Care and Health (Scotland) Act, which was passed by the Scottish Parliament in February 2002 and comes into effect later this year. In future, Scottish young carers under the age of 16 will be able to request an assessment independently of the cared for person. However, the Scottish legislation allows for support and resources, to be provided for carers. This support would take the form of either community care services to the cared for person(s) or children's services to the young carer(s) or their family.

Section 24 of the Children (Scotland) Act entitles a carer to request an assessment of their ability to provide care in relation to a disabled child. The local authority must take that assessment into account when deciding what services to provide for the disabled child. Scottish Office guidance said 'this could include a child or young person who is supporting a disabled sibling at home'. Young carers may also qualify for assistance under Section 22, which stipulates local authorities duties towards children in need. Section 94 of the Children (Scotland) Act defines children 'in need'. The definition includes both children adversely affected by the disability of a family member and also children whose health or development is likely to suffer significantly unless services are provided for them. That could apply to those who provide the substantial and regular care addressed above and also other children who provide a lower level or frequency of care.

The local authority has a duty to promote the welfare of 'children in need' and promote their upbringing by their families where this is consistent with the child's welfare. It must do this by assessing the child's needs and by providing a range and level of services appropriate to the child's needs.

The UN Convention on the Rights of the Child also supports the rights of young carers.

Article 2 states that the rights set out in the Convention have to apply to all children without discrimination of any kind. The disability of the child's parents or guardian is specifically included in the list of the kinds of discrimination that the Convention aims to end.

Article 3 states that all actions concerning the child should take full account of his or her best interests. The State must provide adequate care when parents or others responsible cannot do so.

Article 6 indicates that the State must ensure to the maximum extent possible the survival and development of the child.

Article 12 indicates that the child has a right to express his/her views and have them taken into account in all matters affecting him/her.

Article 28 endorses the child's right to education.

Article 31 deals with the child's right to leisure, recreation and cultural activities.

Considerable attention has recently been paid to the need to provide services for disabled parents so that their children are not forced to undertake inappropriate caring tasks or levels of caring. Direct payments are seen as an important means of giving parents control of delivery of services required. The Community Care (Direct Payments) Act 1996 gave local authorities in Scotland the power, but not the duty, to make direct payments to people who have been assessed as needing community care services. Witcher et al (2000) noted that uptake of direct payments in Scotland had been relatively slow; with only 120 people in Scotland receiving such payments in 1999. More recent research by Scottish Health Feedback (published in February 2002) has shown that the number of recipients had increased to 210. The Regulation of Care (Scotland) Act 2001, extends the scope of direct payments to include children. Since December 2001 local authorities have been able to make direct payments to disabled parents to enable them to purchase services their children need. It will be important to monitor the number of disabled people who use direct payments to assist them in parenting and to assess the impact that this has on their children.

A key document shaping approaches to young carers in the UK is the National Strategy for Carers (Department of Health, 1999). This document places provision for young carers within the wider Government agenda of tackling social exclusion. The difficulty of identifying young carers as a discrete group is acknowledged:

There may be only a narrow dividing line between 'helping round the house', which many children do, and providing personal care for a relative. (Department of Health, 1999)

It is also recognised that the relationship of the young carer to the cared for person may vary. The family member may be:

• A parent with a physical illness, disability, mental health problem or dependency on alcohol or drugs;
• An elderly grandparent who is frail or who has a health problem or disability;
• A brother or sister with a health problem or disability.

Children in single parent families, those from minority ethnic backgrounds or from a family where a parent has a mental health problem are recognised as particularly vulnerable. The effects of being a young carer are regarded as generally negative. These include:

• Problems at school with completing homework and in getting qualifications;
• Isolation from other children of the same age and from other family members;
• Lack of time for play, sports or leisure facilities;
• Conflict between the person they are helping and their own needs, leading to feelings of guilt and resentment;
• Feeling that there is nobody there for them, that professionals do not listen to them and are working only with the adult;
• Lack of recognition, praise or respect for their contribution;
• Feeling that they are different from other children and unable to be part of a group;
• Feeling that no one else understands their experience;
• Problems moving into adulthood, especially with finding work, their own home, and establishing relationships.

Inter-agency work in assessing and meeting the needs of young carers is seen as critical. In addition to supporting the work of young carers projects mainly run by the voluntary sector, the Strategy indicates the Government will:

• Aim to ensure that children whose parents or other relatives have specific needs arising out of disability or health conditions, enjoy the same life chances as all other children in their locality. This requires local authorities to identify children with additional family burdens and to provide services that are geared to ensure these children's education and general development do not suffer.
• Do more to make health, education and social services work together on children's services plans, as set out in the White Paper Modernising Social Services.

• Continue to emphasise the need for co-operation between adults' and children's services within social services departments. This means, for example, that the community care assessment of a disabled parent must pay attention to that disabled person's role as a parent.

The need to provide coherent services for disabled parents was the theme of a Social Services Inspectorate report (SSI, 2000). Based on inspections in eight local authorities, the report noted that disabled parents were likely to encounter considerable difficulty in finding services to support them in meeting the day to day demands of being a parent. The report recommended that services should reflect the social model of disability, which locates deficit not in the individuals but in the physical, social, political and economic environment in which people live. The SSI noted that services tended to be targeted at either children or adults and resourced through different funding routes. As a result, assessments tended to focus on only one aspect of the family's circumstances, rather than being holistic and needs led. Amongst other things, the report recommended a radical shift within local authorities towards corporate working, much better management information about the client group, clear budget information and the use of customer satisfaction surveys.

The Scottish Executive has developed its own Strategy for Carers in Scotland, published in 1999 . The Strategy committed the Executive to addressing the specific needs of young carers by enabling them, for the first time, to have a direct assessment of their needs. They also stated their expectation that all local authorities would pay particular attention to the development of services for young carers. Funds were made available to support young carers through the Family Fund Trust which assists families including a severely disabled child or children living at home, and the Dundee social inclusion partnership, a three year project which aims to identify and support young carers. Other commitments relating to young carers included research to establish the current situation in Scotland, the promotion of support within schools, and the inclusion of young carers in the initial training of teachers. The Scottish Executive promoted more comprehensive arrangements for the regulation of care services through the White Paper 'Aiming for Excellence' (Scottish Executive, 1999a). In January 2000 the Executive set up the independent Scottish Carers' Legislation Working Group to look at what new legislation was needed to support carers better. The Report of the Group (Scottish Executive, 2001) included a brief section on young carers which discussed the legislative anomaly whereby young carers in Scotland were unable to request an independent assessment. Removing this anomaly was one of the Scottish Executive's main commitments in bringing forward the Community Care and Health (Scotland) Act.

The resulting report a brief section on young carers, which discussed the legislative anomaly whereby young carers in Scotland were unable to request an independent assessment. Removing this anomaly was one of the Scottish Executive's main commitments in bringing forward the Community Care and Health (Scotland) Act.

The design of the present study

Much of the published literature has concentrated on the experiences and needs of young carers, as well as advocacy of service and policy responses. Hence quite a lot of the writing is about what ought to be in place rather than actual services. Most publications have dealt only partly or incidentally with the specific topics for this review. As a result it was necessary to extend the present study somewhat beyond a conventional literature search.

Firstly, it was necessary to abstract from the research and practice literature those aspects which refer to identification and non-identification processes by service agencies, and service approaches and evaluations. In addition it was vital to analyse unpublished material, particularly in relation to the situation in Scotland. This gave access to information that was in some respects more up-to-date and more service specific. Also it extended knowledge about services in the Scottish legal and policy context, which were not widely represented in the formal literature. Contact was made with relevant agencies across Scotland with a dual purpose: to request copies of documents related to young carers and to pose a number of questions about the agency and its services. Finally we thought it desirable and feasible to undertake a limited exercise in tapping the knowledge of a small number of 'experts'.

Thus the review has three main elements, which were undertaken concurrently. The first is a review of published work. The applicants already had a stock of British and some North American literature, but in addition carried out a bibliographic search using BIDS and EMBASE. In view of the time-scale, the search was largely confined to English language sources in the last 5 years. Besides using a conventional computer search, the team asked their contacts in other countries about key work they were aware of.

Secondly, the team obtained and reviewed descriptions of services, evaluation reports and other unpublished documents. This part of the review was limited to Scotland, plus any readily available document on important developments elsewhere in the UK. In order to obtain this information, a letter explaining the purpose of the study and a short questionnaire were sent to at least two named individuals in each of the thirty-two local authorities, and fifteen health boards, as well as a number of voluntary organisations. The respondents were asked to provide a copy of any relevant documents. Recipients of these letters were asked to pass a copy of the questionnaire to any organisations working with young carers including groups and young carers projects in their area. Fifty-eight completed questionnaires were received in addition to a considerable number of leaflets, assessment forms, copies of proposals, and reports. Responses were received from most areas, from the Borders in the South to Orkney and Shetland in the North. We are very grateful to all the individuals who sent in responses, which often involved consultation with colleagues as well as the collection of several documents. In order to ensure the confidentiality of respondents, the source of all materials have not been specified, except when they are already in the public domain. In general reports and other 'dated' information will be presented in chronological order to give some understanding of the development of work in this field in Scotland.

Thirdly, a small number of 'experts' were approached by e-mail and telephone to answer a few questions derived from the objectives of the review. These included academics who have published in this field and representatives of about 8 statutory and voluntary agencies in Scotland and England to provide their overview of assessment and service delivery processes. Table 1.1 provides information on our sample of key informants.

Table 1.1: Key informant interviews conducted as part of the review

An interview schedule was prepared which focused on the nature of the organisation, its definition of young carers, how young carers are identified and assessed, the nature of services for young carers and how these might be improved.

Conclusion

In this introductory chapter, the legislation and policy underpinning current approaches to service provision for young carers have been explored. We have also explained the methods employed in this review of the literature of the definition and identification of young carers, the means of assessing their needs and the approach to service provision. In the following chapters, information has been grouped as follows:

• definitions and categories of young carers
• identification processes and inhibiting factors
• needs assessment
• services
• evaluation

Each chapter begins with the review of literature (usually the largest element), then presents separately the data received via questionnaires and key informant interviews.