Best Practice In Key Working[1]

Working in Partnership through Early Support: distance learning text

Best practice in key working: what

do research and policy have to say?

by Care Co-ordination Network UK:

Judith Cavet

Early Support distance learning text Best practice in key working – CCNUK, Judith Cavet

Introduction Disabled children and their families face a multitude of barriers to accessing opportunities and a quality of life equal to those enjoyed by non-disabled children and their families. Research over many years has indicated that the complexity of service provision may itself present a considerable obstacle to the achievement of an environment which best suits both parents and children. As a result there have been a variety of developments geared to the provision of better coordinated services to families with a disabled child. Among these initiatives the value of having one named person who acts to coordinate the input to the family from the various agencies and services involved is now well recognised. Those named as coordinators are now most usually referred to as key workers.

“Key workers for disabled children are often skilled, specialist staff who have a limited case load which enables the child and family to be supported long-term, both emotionally and practically.” (Department for Education and Skills, 2005a, p35).

The aim of this chapter is to present an overview of what is known to date about best practice in key working. The chapter indicates what we mean by key working, why key working is important, who should receive a service, what an effective key worker does and what skills and qualities are needed in a key worker. It then examines what part a key worker can play in the development of a service which is as effective and family-centred as possible. It concludes with a summary, which acknowledges some of the challenges involved in carrying out the key worker role.

What do we mean by key working?

An evolving picture Key working is one element in a drive to improve multiagency working so as to provide ’joined up’ services to families. Our understanding of how best to implement joint working has not been static. Ways of conceptualising interagency working have developed from an emphasis upon a multidisciplinary approach which was prevalent in the 1970s. More recently, authors have promoted interdisciplinary working, (for example, Dale, 1996), and have explored the merits of a transdisciplinary approach (for example, Carpenter, 2000). Watson et al (2001) suggest that there is a continuum of joint working. They characterise multidisciplinary working as individual professionals working together in a single agency, with little coordination between agencies and service delivery focused on the child's needs which are narrowly defined. Interdisciplinary working is described as "an approach where individual professionals from different agencies assess separately the needs of children and families, but meet to share information, discuss their findings and set goals." (Watson et al, 2001, p51). Transdisciplinary working is conceptualised as "a synthesis of services" (Watson et al, 2001, p53), whereby packages of support are designed to meet the needs and aspirations of the child and their family. In the transdisciplinary model, as proposed by Watson et al (2001), a professional whose post is funded on a multiagency basis performs an essential role of advice giving and service design, delivery and coordination. However, Watson et al (2001) go on to recognise that real life is less clear cut than

Early Support Crown copyright 2007 2


these typologies, and that, in practice, professionals and agencies work together using a variety of approaches. In different parts of England and Wales there has been a history of local initiatives in service coordination and key working, each with their own features and patterns of operation. It is clear from research that in the past there has been no specific formula for key working, and that key worker services differ considerably in the way they operate (eg Townsley et al, 2004; Greco et al, 2005). Moreover, there have been regional and local variations in the terms by which key workers have been known (eg Townsley et al, 2004; Greco et al, 2005). Terms such as ’link worker’, ’family support worker’ or ’care coordinator’ have been employed for the role which here we are calling ’key worker’. Furthermore, the term ’key worker’ is sometimes used to refer to "a practitioner acting in a more mentoring or befriending capacity." (DfES, 2005a, p34). There is an important distinction to be drawn between professionals who find themselves key working on an informal basis and those working in a key worker service where they have formal status as the family’s named worker (Mukherjee et al, 1999). It is with this second type of key worker who has formal status that we are concerned here.

Importance of definitions Given this somewhat fragmented and potentially confusing picture it is important that both professionals and service users are clear about what is meant by key working. Care Co-ordination Network UK (CCNUK) has been working to promote clarity and the development of high organisational and practice standards. CCNUK’s definitions of both key working and key workers are provided below; CCNUK regards key working as synonymous with care coordination.

CCNUK’s definition of key working "Key working/care coordination is a service, involving two or more agencies, that provide disabled children and young people and their families with a system whereby services from different agencies are coordinated. It encompasses individual tailoring of services based on assessment of need, interagency collaboration at strategic and practice levels, and a named key worker for the child and family. Families with disabled children should only have a key worker if they want one." (CCNUK, 2004, p1)

CCNUK’s definition of a key worker "A key worker is both the source of support for disabled children and young people and their families and a link by which other services are accessed and used effectively. Key workers have responsibility for working together with the family and with professionals from services and for ensuring delivery of an interagency care plan for the child and the family." (CCNUK, 2004, p1)

The variety of types of service collaboration has led to key workers being employed on different bases. Some key workers operate as ’designated’ key workers – in this case their professional role is confined to key working. However, frequently key



workers act as care coordinators to only a few families; this is in addition to their normal professional role. These part-time key workers are known as ’non-designated’ key workers. However, essential requirements of both types of key workers are similar. The definition of the key worker’s role provided by CCNUK above is virtually synonymous with that proposed by the government in 2003 (see DfES and Department of Health, 2003, p22) and endorsed in 2005 (see DfES, 2005a, p34).

Which professionals should key work? Key workers may come from different agencies, and should be selected according to the specific needs of the child. (DfES and DoH, 2003). In addition, some parents may choose to act as key worker (Department for Education and Skills and Department of Health, 2003). Research to date suggests that there is no particular profession whose members are best suited to act as key workers, and that systemic factors (such as effects of training, supervision and time allocation) have more effect on key workers’ effectiveness than their professional backgrounds (Greco et al, 2005). It is important that whoever takes on the key worker role has enough time available. Non-designated key workers need time which is allocated for the extra tasks involved (Greco et al, 2005). There is some evidence that the demands on certain professional groups may militate against their success as key workers. Practical problems may arise when teachers act as key workers because timetabling constrains their ability to attend meetings (Townsley et al, 2004; Greco et al, 2005). In addition, Greco et al (2005) found that in one service, social workers’ commitment to key working could be impeded by the demands of other aspects of their work. Earlier research by Mukherjee et al (2000) summarised these tendencies by noting that jobs which constrain a person’s ability to be a key worker include those where home visiting is likely to be difficult and those in which workers’ statutory responsibilities take precedence over their role as an advocate for the family.

Why is key working important?

Policy initiatives Policy initiatives encouraging interagency working and a ’named person’ to guide families through the complex pattern of service delivery were established in the final three decades of the last century. In this century the government’s imperative to provide coordinated services has been enshrined in a variety of policy documents. The concept of having one named person to coordinate services is now required of service providers as a means of raising standards. In England, recent guidance to professionals working with families with a disabled child states:

"Effective use of key working is one of the key issues for improving standards. All children with complex needs and their families should be allocated a key worker who works in partnership with them, with the function of coordinating service provision and providing a clear point of reference for the family." (Department for Education and Skills and Department of Health, 2003, p22).

The National Service Frameworks for Children which have been developed both in England and in Wales emphasise the importance of the need for coordinated services for children and young people. In England, the National Service Framework for Children, developed as part of the Every Child Matters agenda, refers to the



importance of coordination of services both in the general standards which apply to all children, and in standard 8 which deals with the particular requirements of children who are disabled or who have complex health needs. Standard 8 sees the employment of key workers as one means of facilitating "better early intervention in support of parents." (DoH, 2004a, p21). It places a duty on local authorities, primary care trusts and NHS trusts to ensure that:

"Families caring for a disabled child with high levels of need have a key worker/care manager to oversee and manage the delivery of services from all agencies involved in the care and support of the child and family, and to ensure that the family has access to appropriate services." (DoH, 2004b, section 5.8).

In Wales, the first National Service Framework standard requires that all children who need two or more ongoing specialist services will have these coordinated by a key worker. In the consultation document about the Welsh National Service Framework the chapter about disabled children states that a key worker service should be provided for families with children who have complex needs (Welsh Assembly Government, 2004). A similar drive to better coordinated, multiagency working is discernible in Scotland where it is planned that NHS boards will implement key worker models of care for children with complex needs before 2009 (Scottish Executive, 2005).

Research evidence These and other policy initiatives which promote key worker services are supported by research evidence. Liabo et al (2001) concluded from a review of relevant literature that where a key worker system is present, the quality of life of families with disabled children is improved.

"Specific outcomes are better relationships with services, better and quicker access to statutory and discretionary benefits, both financial and environmental, and reduced levels of stress." (Liabo et al, 2001, p3).

The same authors report that key worker systems contribute to the empowerment of parents and that key workers themselves regard the development positively. Similar views about the value of a key worker service were reported by Townsley et al (2004). These authors found that half of the families in their sample felt that their access to support services had improved, while two-thirds considered their key worker service to be positive for their quality of life. Likewise, Greco et al (2005) found that key worker services were regarded as providing significant advantages both to families using the service and to staff.

Likely expansion of key worker services In total, a considerable weight of policy documents and research evidence has been assembled which highlights the importance of key working. Nevertheless, in recent years key worker services have been established in only a minority of local authority areas. Greco et al (2005) reported that in a survey of key working services in the UK, thirty five areas (22 per cent) reported having care coordination services by December 2002. Of these thirty five areas, thirty provided key workers to families. However, this picture appears to be changing quite rapidly. Greco et al (2005) reported that fifty more schemes were planned for the following year. (For more details about the current locations and profiles of key working schemes in the UK, see the CCNUK website – www.ccnuk.org.uk.)



The prevalence of disability is increasing in Britain. The number of disabled children has increased by 62 per cent since 1975, and is now estimated at 770,000 (Balls, 2006). There are additional factors which may drive the expansion of key working. Increasing numbers of children are being reported as having complex needs (Prime Minister’s Strategy Unit, 2005); this may well lead to increased demand for service coordination by means of key working. Another impetus to the development of key worker schemes is likely to result from the recommendation that from 2006 the availability of a key working service should be considered for inclusion as a key performance indicator in joint area reviews of children's services (Prime Minister's Strategy Unit, 2005).

Eligibility: Who should receive a key working service?

Children with complex needs Policy documents indicate that eligibility for a key working service is related to how severely disabled a child is and whether they are assessed as having a high level of need. Guidance to professionals about key working refers to "complex needs" (Department for Education and Skills and Department of Health, 2003, p22 – our emphasis). Standard 8 of the National Service Framework for Children, Young People and Maternity Services, states:

"Parents of severely disabled children or those with high levels of need require a single point of contact with services and an effective trusted and informed named person (a 'key worker' or care manager) to help them obtain the services they require." (Department of Health, 2004b, section 5.8 – our emphasis).

Thus there is a clear message that key working is a service for those families whose child has a high level of need and is, therefore, liable to be in contact with a wide variety of services which require coordination. Eligibility criteria for services are developed locally but are required to be "transparent and developed in partnership with local service providers and parent support groups." (Prime Minister’s Strategy Unit, 2005, p113). There is some measure of flexibility as regards who should receive a service. Priority access to a key worker should be provided to "families with high needs, because of severe impairment or other circumstances." (Prime Minister’s Strategy Unit, 2005, p113 – our emphasis). While these "other circumstances" are unspecified in the document in question, Mukherjee et al (2000) indicate that families are most likely to need a key worker service at the critical points of diagnosis and transition. They also report that parents themselves suggested that particular families, namely single parents or those living in unsupportive relationships should be given priority when families are allocated a key worker.

Role of lead professionals In order to promote more streamlined services to children the government has introduced the concept of the "lead professional" (DfES, 2005a). Like a key worker, a lead professional has a coordination role. So what is the difference between the two roles? In general, a key worker offers more intense and complex support than might be expected of a lead professional, although the needs of individual families may change and local practice may vary (DfES and DoH, 2006).



A government minister explained that lead professionals support families with children who do not meet the thresholds for statutory services, but who, nevertheless, have significant needs.

"You could summarise the key worker role as a more 'in-depth' approach, for children with more complex needs. The role involves providing emotional support as well as practical support such as assessing the needs of all family members, providing information and acting as an advocate. Lead professionals are likely to act in a broader coordinating capacity. It is likely that different local areas will develop different models of practice, which form a continuum of support for children and families, with a designated key worker at one end of the continuum and a lead professional providing coordination between a small number of agencies at the other end. These models will need to reflect the support required by the family, whose needs may change over time.” (Eagle, 2005, p1).

A disabled child with a key worker will not require a separate lead professional. However, it is important that effective arrangements are in place for families whose needs change in order to ensure a smooth transition between arrangements offering a lead professional and those offering a key worker (DfES, 2005a). Overall, English policy guidance about the role of the lead professional (DfES, 2005a) reminds readers that key worker services should be provided in line with the key worker standards produced by CCNUK (2004), and points to the long-term and ongoing nature of key working. Key working is seen as having an emphasis on the coordination of multiple contacts with different agencies and liaison with families to ensure their information needs are met (DfES, 2005a). Further guidance for English practitioners is expected.

Key worker’s role: what does a key worker do? English policy guidance states that key workers should provide:

• “A single point of reference for information. • Help in identifying the needs of the child and family. • Regular review of support arrangements in the context of growing

understanding of a child's abilities and needs. • Regular, long-term contact and continuity of support. • A means to coordinate support from different agencies. • Personal or emotional support, sensitive to needs and family circumstances. • Help to enable families to access and receive relevant services. • Help for families to look forward to the child's next stage of development and

anticipate service needs. • A role in implementing the plan."

(Department of Health and Department for Education and Skills, 2003, cited in Department for Education and Skills, 2005a, pp34–35). Research indicates that positive outcomes for families are promoted when key workers carry out the majority of the aspects of key working listed below:

• “Providing information and advice to families about services and support available, both locally and nationally, and how to access these.



• Providing information specific to the child’s condition when needed.

• Coordinating care and working across agencies, including supporting families with regard to care planning and review meetings.

• Improving access to services. • Identifying and addressing the needs of all family members. • Speaking on behalf of the family when dealing with services. • Providing emotional support. • Providing help and support in a crisis.” (Greco et al, 2005,

p195). These tasks have been condensed to four principal points in the practice standards developed by CCNUK (see box below). The four areas identified are considered further in the rest of this section. Key worker role 1. Providing information. 2. Identifying and addressing the needs of all family members. 3. Providing emotional and practical support as required. 4. Assisting families in their dealings with agencies and acting as an advocate if required. (CCNUK, 2004, p3)

Providing information There has been a good deal of research indicating problems in the way families of disabled children gain access to the information they require. Often they acquire information in an ad hoc, piecemeal fashion, rather than when they need it. Not knowing what support is available or the full implications of their child’s condition inhibits families’ abilities to plan or act effectively. Disabled children and their parents can be involved meaningfully in decisions about services or treatment but only if they are fully informed of the alternatives. The provision of appropriate information can be an important aspect of families feeling empowered (Mitchell and Sloper, 2002). Key workers should ensure families have "information tailored for them that is accessible, accurate, timely and appropriate." (CCNUK, 2004, p3). Key workers should provide "a single reference point for information" (Department for Education and Skills and Department of Health, 2003, p23) and help for families in anticipating future needs (Department for Education and Skills and Department of Health, 2003). Parents want "succinct directories or summaries of local services and support, alongside more informative and wide-ranging, in-depth booklets, whilst being supported by locally based 'facilitators' or 'key workers'.” (Mitchell and Sloper, 2002, p80). Good quality, printed information is necessary, but in itself it is insufficient. Parents also want personal guidance. Key workers need to work closely with individual families, so that their needs for information can be assessed and met in a timely and targeted away. To do this, key workers need to have adequate knowledge and resources, as well as the ability to liaise with services to obtain the necessary information. To this end, well coordinated services will have a "central bank of information for parents." (Department for Education and Skills and Department of Health, 2003, p39).



Particular attention is necessary to meet the information needs of some minority groups. Chamba et al (1999) have indicated that difficulties exist for minority ethnic families in gaining access to adequate information because of poor interpreting support and limited availability of translated materials. The information needs of some disabled parents will also need especially careful attention by key workers if the families are to gain the multi-faceted sources of information they require. Providing information about financial support for families with a disabled child is an area for concern since we know families with a disabled child have higher costs than other families and that their income may well be lower (Beresford, 1995). There is evidence that families with a disabled child under the age of five have particularly acute needs in this regard (Department for Education and Skills and Department of Health, 2003). Families need "clear, relevant information about all financial benefits available." (Department for Education and Skills and Department of Health, 2003, p36). As well as information about welfare benefits and tax credits, family should receive information about recouping the cost of transport to hospital and about the possibility of a referral to a nappy service, as well as about sources of aid like the Family Fund Trust (Department for Education and Skills and Department of Health, 2003). Research into the information needs of parents of disabled children points to its particular importance at key points, for example, in diagnosis and starting school (Mitchell and Sloper, 2002). Therefore, booklets have been produced to help professionals meet parents’ information needs soon after the identification of their child’s condition (Early Support, 2004). A variety of booklets are available about different types of impairment and circumstance. In the area of education, key workers have the potential to fulfil a very important role as “information brokers” (Greco et al, 2005, p190). Key workers can provide a useful service by explaining school procedures and processes to families, while advising teachers about children’s attitudes and behaviour and, in mainstream school, the implications of their impairments (Greco et al, 2005, p190). As well as attending to parental information needs, key workers have an additional role to play in ensuring that the information needs of other members of the family are met. In particular, disabled young people have changing information needs. This means information is required regularly which is delivered in a variety of ways and appropriate to the individual needs of the young person concerned (Beresford and Sloper, 1999).

Identifying and addressing the needs of all family members Research suggests that families of a disabled child want to be treated holistically (Townsley et al, 2004; Greco et al, 2005).

“Most families had a very strong desire to do things together and to be perceived as a whole family. Multiagency services did not appear to be able to respond to this and the focus of support was very much focused on the disabled child with complex health care needs, to the detriment of other family members and the family as a whole." (Townsley et al, 2004, p51).

Effective key working involves proactive, regular contact with families and the adoption of a whole family approach (Mukherjee et al, 2000). There is research



evidence that mothers are the main point of contact for key workers (Townsley et al, 2004; Greco et al, 2005). Although the families involved were generally positive about being listened to (Townsley et al, 2004; Greco et al, 2005), this way of key working involves a danger that the views of other family members may be marginalised. Key workers should be alert to this possibility. Services need to be flexible in responding to families, taking into account the life patterns of fathers and involving them in decision making (Carpenter, 2000). Assessments need to recognise the diversity of families and that they may include "significant others" as sources of support (Carpenter, 2000, p137). In England the National Service Framework for Children, Young People and Maternity Services, indicates that packages of care should be responsive to the needs of the whole family, including father and siblings (Prime Minister's Strategy Unit, 2005). The work of Strohm (2002) supports this approach since she underlines the inter-relatedness of families. "If we support the whole family, we are supporting the person with special needs." (Strohm, 2002, p192). She suggests that a disabled child progresses best when their parents and siblings all "are able to feel confident and emotionally supported." (Strohm, 2002, p172). Taking a long-term perspective she argues that siblings have an important role to play since sibling relationships are usually the longest lasting within a family. If sibling needs are met, she suggests, that they are more likely to continue their relationship and add to the quality of life of the disabled sibling in adulthood. In the shorter term she notes that siblings play a crucial role in each others’ development. Strohm’s view is that:

“In order to grow into emotionally strong adults, siblings need: • Clear information. • To be included in discussions. • Opportunities to share their feelings and experiences. • To feel confident. • To feel special. • To be seen as a valued participant in supporting a brother or sister

with special needs. • A sense that they can influence what happens around them. • Contact with other siblings. • A strong network of social support." (Strohm, 2002, pp188–189).

It is important that key workers, when considering the interests of siblings, do not assume their experience of their disabled brother or sister is a negative one. Research in Scotland found that siblings saw their relationship with their disabled brother or sister in "predominantly positive terms" (Connors and Stalker, 2003, p126), with a large reciprocal element. Any frustrations and resentments related chiefly either to other people's attitudes or to their parents’ preoccupation with the disabled child, although some siblings were bullied because of their disabled brother or sister. Most said they worried about their disabled brother or sister, largely because they perceived them as being vulnerable. However, these authors note that a key theme emerging from this study was the "'ordinariness' of the siblings’ relationships.” (Connors and Stalker, 2003, p137). Burke (2004) points out that children have a legal right to have their views heard, so that key workers should take into account both the needs of disabled children and those of their non-disabled siblings. "Practitioners must communicate with children in



order to understand these needs, because not to do so is a denial of their right to be involved in matters which concern them." (Burke, 2004, p110). Key workers need to make particular efforts to communicate directly with disabled children on their caseload. Townsley et al (2004) found very few examples of strong individual relationships between professionals and disabled children. This was said to be due to lack of time and communication difficulties. There is a need for key workers to be trained in communication and consultation with disabled children, and to be allocated the necessary time these tasks take (Greco et al, 2005).

Providing emotional and practical support as required Policy guidance requires key workers to provide "personal or emotional support, sensitive to needs and family circumstances." (Department for Education and Skills and Department of Health, 2003, p23). The need for key workers to provide emotional support emerges consistently from research about key working (eg Greco et al, 2005; Townsley et al, 2004; Mukherjee et al, 2000). However, Townsley et al (2004) found that of the families they interviewed only half who had a key worker felt the key worker would provide emotional support, if they needed it. The families faced multiple sources of emotional pressure, including disagreements and lack of coordination between services. Added to this was the feeling of being always on-call, the requirement to carry out nursing tasks, lack of privacy and a lack of back-up and continuity. In their review, Liabo et al (2001) noted that the two key worker roles most appreciated by parents were "'someone to talk to', along with the coordinating and facilitating role of the key worker." (Liabo et al, 2001, p18). Key workers are required both to know how to listen to families, and then, having understood their needs and aspirations, to ensure that effective action is taken to improve service delivery in a way which promotes families’ well-being. The factors which Townsley et al (2004) indicate as being sources of emotional pressure are susceptible to positive intervention by professionals, if practical efforts are made to alleviate them. Practical support put in place by key workers may be in the form of help or advice directly relevant to the disabled child's care and treatment or may be aimed at improving the physical, social or educational environment of the disabled child. It might take the form of initiating or streamlining service input. Sometimes it will take the form of services for other family members. Key workers have an important part to play putting together packages of care in order to alleviate the emotional stresses families reported in Townsley et al’s (2004) study. How a key worker might operate to mitigate the stress on families with a child with complex needs is illustrated in a publication (Department of Health, 2005) which outlines the journey through services of one family whose young daughter, Maria, is affected by cerebral palsy. As the effects of Maria's condition become increasingly apparent, the family come into contact with an extensive array of professionals from a variety of service settings. When Maria is six months old, the family requests a key worker to help them with information and practical help. The family’s health visitor volunteers and plays a role in arranging and coordinating contact with other agencies. She also works to provide emotional support by contacting the family and providing a listening ear when they are likely to be upset – for example, after Maria has been admitted to hospital on an emergency basis. The key worker is proactive in making contact with the family and wants to know how Maria’s parents and siblings are feeling. Maria’s key worker also explains to the family the purpose of an Early



Support family service plan. The plan is subsequently agreed at a multiagency meeting and serves a number of functions.

"Early Support Family Service Plans identify the range of support required by a family and how it will be reviewed. They encourage discussion of service needs and can prevent families being asked the same questions by different people. They do not replace other statutory assessments that need to take place." (DfES and DoH, 2005, p16).

A family service plan is an output from assessment, a summary of which families should receive within a specified period after the early assessment (DfES and DoH, 2003). Its format must be accessible to parents (DfES and DoH, 2003). The provision of emotional and practical support suited to family needs depends on accurate assessment. Key workers have an important role to play in ensuring that assessment properly reflects individual families’ needs and preferences. “The assessment of the disabled child must address the needs of parent carers." (DoH, 2000, section 3.6, cited in Early Support, 2004, p 57). Assessment is a “process of gathering information about the health, education and social needs of a child.” (DfES and DoH, 2003, p16). It should identify:

The disabling social and physical barriers which are adversely affecting the child’s access to a good quality of life.

The service input needed to overcome these barriers. (DfES and DoH, 2003).

Policy guidance (eg DfES and DoH, 2003) emphasises the role that early assessment of need plays in ensuring the right support is available to a family with a severely disabled child. Assessment is not a single event, but a continuing process which should be flexible and responsive to changing needs (DfES and DoH, 2003). The assessment process should be coordinated so that parents do not have to repeat the same information to different professionals (DfES and DoH, 2003).

“The general principle should be that wherever possible, statutory processes use and build on whatever is already known about the child and family, including any relevant documentation, in order to reduce demand on families." (Early Support, 2004, p47).

Thus, in the case of an Early Support family service plan, if an initial assessment has been completed by social workers, this should inform discussions between the family and services, and the development of the subsequent family service plan (Early Support, 2004). On the other hand, where a family has had little contact with services, the Early Support family service plan may be the starting point for further assessments (Early Support, 2004). As part of the Every Child Matters agenda, the government is introducing a Common Assessment Framework (CAF) as a recent initiative in the drive to promote interagency working. The CAF is intended to encourage earlier intervention for children with additional needs and to reduce the number and duration of assessment processes for children (DfES, 2005b). Implications of the CAF for key workers lie in its potential for:

Encouraging the earlier identification of children with complex needs who require service coordination.

Improved information sharing between agencies.



When the CAF is in place and a child has “complex needs requiring specialist assessment and intervention, the common assessment information will feed into the specialist assessment process.” (DfES, 2005b, p1).

Assistance in dealing with agencies and acting as an advocate Working across agencies is a core element of a key worker service (Mukherjee et al, 2000).

"There is a particularly important role for key workers at the early stages, when the family have just learnt about the child's diagnosis, in terms of knowing what different agencies, or services within agencies, might be able to offer a family, knowing how to go about accessing them, and then giving that information to parents for them to act on or acting on their behalf." (Mukherjee et al, 2000, p6).

Key workers and families will need to agree how far and in what circumstances family members need help in accessing services and what form this help should take. Dale (1996) distinguishes between enabling and advocacy, both of which she identifies as methods of empowering parents. In the case of enabling, parents utilise their own resources, with professional encouragement. An example of enabling, according to Dale’s analysis, would be making efforts to promote families’ control over services. Advocacy involves representing another’s views on their behalf. Dale suggests that circumstances where advocacy may be valuable include those where the person is unable for some reason to advocate for themselves, or where expert representation is needed or where a parent has been "actively marginalised or disempowered." (Dale, 1996, p272). Some parents may not need assistance in the form of advocacy or want it only rarely. However, there is evidence (eg Mukherjee et al, 2000; Townsley et al, 2004) that parents value having professionals to act as their advocate as they perceive them as having higher status and, therefore, more power to influence service systems. Many families are likely to need assistance in relation to the interagency meetings and plans which are a feature of key working services. Key workers have a role to play in preparing families for these meetings, ensuring their wishes and needs are represented and in implementing the decisions taken at the meetings. CCNUK’s practice standards as regards assessment, planning and review include:

• “Supporting parents’ and young people's preferences regarding assessment and review meetings.

• Ensuring appropriate support for children and young people to participate in their assessment and review, including children and young people who do not use speech to communicate.

• Appropriate support for parents to participate in their assessment and review process.

• Consideration of support needs related to ethnicity and culture, including provision of translation and interpreters, so that all families can participate in assessment and review." (CCNUK, 2004, p4).



Which skills and qualities are required in key workers? The skills and qualities which are important to being a successful key worker include:

• “Basic counselling and communication skills. • Respect for parents’ and children's expertise about their own

lives. • Negotiation skills. • Knowledge of disability and services provided by all relevant

agencies: health, education, social services, housing, leisure, voluntary agencies, benefits and welfare rights.” (Mukherjee et al, 2000, p6).

These four skills and qualities are considered in more detail below.

Basic counselling and communication skills As early as 1985, researchers were indicating how professionals might communicate effectively with families with a disabled child. Pointing to "the variety, individuality and normality within and between families." Cunningham and Davis (1985, p67) indicated that key aspects of communication with families with a disabled child are:

• Respect • Genuineness • Attending • Getting parents to talk • Empathy • Challenging skills.

Later, Davis wrote in a similar vein about ways of developing a helping relationship with parents with children with chronic illness or disability. He advocated a partnership model which involves "working closely, common aims, complementary expertise, respect, negotiation, communication, honesty and flexibility." (Davis, 1993, p52). Recent research indicates the continuing relevance of these skills and attitudes to current practice in key working (Greco et al, 2005). In the most recent research to date, the first two qualities listed as needed by key workers are:

• "Good communication and listening skills. • The ability to empathise with families, build support and develop

relationships of trust with families and other professionals." (Greco et al, 2005, p51).

Professionals working with families with a disabled child need to adopt a position of:

"Respect for the daily reality of family life for parents who are raising young children in a situation which presents them with repeated, unusual and unpredictable challenges and which is often highly emotionally charged." (Early Support, 2004, pp18–19).

Respect for parents and children's expertise about their own lives Cunningham and Davis (1985) highlighted the importance of recognising the competence of families with children with special needs, rather than approaching



them with preconceived notions of pathology. They argued for partnership with parents who, they proposed, should be regarded as consumers. They emphasised respect for parents’ expertise. Building on these insights and the communication skills identified in the subsection above, Davis et al (2002) have developed the ’Parent Adviser’ model (now called the Family Partnership Model). This approach1 highlights the importance of those in helping roles establishing an active partnership with parents of children with special needs so that families’ problem solving abilities can be enhanced. With regard to key working, Mukherjee et al (2000) underline the need to work with families’ strengths and ways of coping.

“Key workers should adopt a flexible, individualistic approach with families. This means identifying the families’ strengths and preferred ways of coping, and then negotiating with them what support they want.” (Mukherjee et al, 2000, p6).

Similar qualities to those advocated by Cunningham and Davis – with regards to building a helping relationship with parents – are also important to facilitating a helping relationship with children. Building a positive relationship with a child with chronic health problems rests on “empathy, respect, genuineness, humility and enthusiasm." (Edwards and Davis, 1997, p 81). Professionals need to utilise this type of approach to establish a relationship with children in families for which they are the key worker. Burke (2004) has highlighted how the needs of a disabled child may be "subsumed" under the voices of more articulate adults, usually parents. It is important that key workers recognise children's expertise by exploring their views directly.

"It would be foolish not to recognise that parents may speak ably for their children, but it would be equally wrong not to make every effort to communicate in whatever way possible with the children themselves, and children include not only those with disabilities but siblings too. It should not be a matter of competition either – of whose rights will be served; the rights of children should be in balance and equally considered and when issues of child protection arise, the needs of the child come first." (Burke, 2004, pp111–112).

Negotiation skills Professionals require a way of working in partnership with parents which is able to accommodate disagreement. In 1996, Dale put forward the Negotiating Model, as the preferred way of developing partnerships with parents. The model focuses on negotiation as the key transaction for partnership working and within this approach it is possible to manage dissent. Dale describes the Negotiating Model as:

"A working relationship where partners use negotiation and joint decision making and resolve differences of opinion and disagreement, in order to reach some kind of shared perspective or jointly agreed decision on issues of mutual concern." (Dale, 1996, p14).

Underpinning this approach is the belief that parents and professionals both have their own different but very important contributions to offer. Dale's model is based on decision making through two-way dialogue. Professionals have to learn about

1 For more information about the Family Partnership model see the Early Support distance learning text chapter by Hilton Davis and Lorraine Meltzer – Working with parents in partnership



parents’ perspectives by making considerable efforts at listening, inquiry and openness (Dale, 1996). Dale's approach proposes that negotiation with parents should take place within the context of the sort of mutually respectful relationship advocated by Cunningham and Davis (1985). As well as working in partnership with parents and negotiating decisions with them, key workers must also work in partnership and negotiate with other professionals. Key workers work with colleagues from other agencies in arrangements which differ considerably as to the degree of collaboration involved. Whether professionals are dealing with colleagues within their interagency network or with professionals who are employed in services outside the key working service, Cunningham and Davis (1985) postulate that interdisciplinary cooperation depends on team members respecting each other. If professionals are to establish good working relationships, they need to adopt the same principles as when working with parents: ie each team member has their own expertise and complementary skills, and, therefore, equal status (Cunningham and Davis, 1985). Parents’ views about this theoretical equality of status may be somewhat more sceptical. There is some evidence that they think not only that professionals have more influence than parents in negotiating with service providers, but also that some professionals have higher status and, therefore, more clout than others (Townsley et al, 2004). Whatever their status, professionals will have more authority in negotiations with other professionals if they have a sound grasp of disability services and families’ entitlements.

Knowledge of disability and services Key workers require an in-depth knowledge of what services are available locally, regionally and nationally. Key workers need to know about services and agencies that are outside of their own professional orbit. Greco et al (2005) point out this requires an unusually broad spectrum of knowledge for professionals who work in a specialised role. Parents realise that workers will not have all knowledge at their fingertips, but appreciate workers making the effort to obtain the information they need (Greco et al, 2005). As well as being involved in active collaboration with health, local children’s services (including education) and voluntary bodies, key workers need to know what services can help relieve the poverty families with disabled children often face, and how to overcome issues relating to obtaining suitable accommodation and equipment. They also need to know how family members can be put in contact with other people coping with similar issues so that they can obtain peer support. Key workers need to know about different ways in which families can be provided with a break or receive domiciliary support, as well as information about access to leisure activities, including holidays. In addition to key workers needing to have detailed knowledge about the services and agencies which have a role to play in providing the best possible environment for a disabled child and their family, research suggests that it is helpful when key workers have a real understanding of the disabled child's impairment and what this involves and that families value this (Greco et al, 2005). Townsley et al (2004) noted that multiagency services did not appear to pay much attention to supporting parents to develop new skills in managing their child's complex health care needs. Parents may need to learn nursing procedures in order to support their child at home. This is an area where, by liaising with the right colleagues, key workers with appropriate



knowledge of service provision can reduce parents’ anxieties and family stress, while acting to improve the disabled child’s care. Disability services are a rapidly changing field and key workers need to have an up-to-date grasp. Families are likely to require information about new developments and also alterations and amendments to existing initiatives. For example, the introduction of direct payments for parent/carers under the Carers and Disabled Children Act 2000, is an example of families being offered a new option in terms of service provision, but also an additional layer of complexity to address. Key workers need to be aware not only of developments in legislation, but also of useful sources of support and advice so that families can realise the potential of such innovations. Key workers should also have knowledge of child protection issues (Greco et al, 2005) and how these might be utilised to protect disabled children at risk of abuse or neglect. The provisions of the Disability Discrimination Act 1995 are also relevant knowledge for key workers who may need to inform families of their entitlements in accessing goods and services.

Attaining the necessary skills and knowledge2

Given the broad range of skills and knowledge required of key workers, it follows that they may have learning needs in a variety of areas. Greco et al (2005) suggest their induction and ongoing training needs may include:

• "Information about the work of all agencies relevant to disabled children and their families, and if possible the provision of key contacts in these agencies.

• Information about common disabling conditions and about where to find further information.

• Information about relevant legislation. • Information about sources of financial support for families and

eligibility criteria. • The personal skills needed by key workers – communication,

listening and negotiating skills; communication with disabled children; time management.

• Disability awareness and understanding of what life is like for families with disabled children." (Greco et al, 2005, pp195–196).

There is evidence that key working offers professionals the opportunity to broaden their knowledge base and skills (eg Townsley et al, 2004). Key workers can benefit from the opportunity to meet and share experiences with their peers (Greco et al, 2005). There is also some evidence that interagency training, especially as part of continuing professional education, can help foster multiagency collaboration (Sloper, 2004). Key workers need to identify their training needs and analyse how these can be met in the most productive way.

How can key workers play a part in the development of an effective service? The skills, qualities and knowledge base which key workers bring to their job will be important to their effectiveness in this role, but systemic issues are also highly 2 See also the Early Support guide to key worker training – www.earlysupport.org.uk/training



relevant. The management and organisation of the services within which they operate will have a significant impact on the outcomes for the families they serve. Services should be family-centred, well-planned, well-coordinated, accessible, competent and accountable (Department for Education and Skills and Department of Health, 2003). Greco et al (2005) highlight the importance of an effectively managed service, with adequate resources and commitment from all key agencies. They underline the value of multiagency care planning and review meetings which are combined with other reviews. They also point out the utility of parental involvement in steering groups. In order to be as effective as possible, key workers need time to carry out their role, plus adequate supervision and opportunities for induction and ongoing training (Department for Education and Skills and Department of Health, 2003; Greco et al, 2005). Greco et al (2005) have highlighted the importance of a service manager. They found that in the most effective services there was a dedicated manager who was central to ensuring key workers were clear about their role and provided with regular supervision, training and peer support. CCNUK’s (2004) key worker standards also underline the need for a key worker manager who provides regular supervision to team members.

Developing working relationships with the community Confusion has been reported among both key workers and the families they serve about what the key working role should include and what families can expect from key workers (Townsley et al, 2004; Greco et al, 2005). Key workers have a role to play in counteracting this confusion. Greco et al (2005) found that the most effective services had clearly defined roles which were understood by key workers, families and colleagues in other services. Therefore, key workers need to be clear about what their role involves and:

"… disabled children, young people and their families should be given a clear explanation of the role of the key worker/care coordination service and the responsibilities of this role. Families should be reminded of this role from time to time." (CCNUK, 2004, p3).

A successful key worker service requires an agreed referral system and specified guidelines for eligibility, as well as a joint policy for information sharing between agencies (CCNUK, 2004). Key workers will need to be familiar with these systems. They will also need to play a part in their key working service’s efforts in "identifying the cultural needs of the local population, including minority ethnic groups, and ensuring that the service provides for these needs." (CCNUK, 2004, p2). Key workers should ensure that relevant professionals know about their service and what it can offer. For example, there is evidence that key workers have a positive contribution to make in terms of improving children's experience of education and helping families overcome difficulties encountered in their relationship with schools (Greco et al, 2005). Key workers have a role to play in introducing the key worker service to schools. In order to establish a positive basis for a working relationship, key workers should be proactive in contacting a school when a child with whom they are working becomes a pupil or if a pupil at the school is allocated to their case load (Greco et al, 2005).



Developing services which focus on families’ perspectives Key working has been described as "a sensible and pragmatic approach" (Watson et al, 2001, p56), undertaken to coordinate existing services to improve their delivery to families. It is not a radical approach intended to change existing services (Watson et al, 2001). Different and additional strategies are needed to instigate changes in services. Nor is key working a panacea. Even where an effective key working service is in place, key workers may come up against barriers if a lack of resources means that services which families require are not available (Greco et al, 2005). There is an important link between assessment, service delivery and service development (Liabo, 2001). It is important that key workers play their part in documenting the unmet needs of local families so that this information can be taken into account when plans for future spending are being developed.

"It is important that key worker services carry out comprehensive assessments of the needs of children and their parents and that data from such assessments inform the development of services at a multiagency level in local areas." (Greco et al, 2005, p191).

Documenting unmet need is one way of ensuring a key worker service is as responsive to families as possible. Another feature of service organisation which helps to promote an effective service is parent membership of the steering group overseeing the key worker service. In addition to these measures, further efforts need to be made to promote the development of services which meet families’ aspirations. Townsley et al (2004) reported that in the services they researched:

"… family involvement in planning, developing and evaluating services was fairly ad hoc and lacked clarity of purpose to the families who did take part." (Townsley et al, 2004, p59).

These authors were concerned about a lack of opportunities (in some services) for families to provide feedback about services. Seeking families’ perspectives would have offered the potential for positive change. Moreover, children and young people were rarely asked for their views about the services they received. There is evidence that disabled children and young people can participate in individual decisions about their lives and in public decisions about service development, given the right environment (Cavet and Sloper, 2004). Greco et al (2005) highlight the need for the participation of children and young people in decisions about how services should be developed, and for the resources required to accomplish the consultation process involved. Practical issues to consider when planning the involvement of disabled children and young people in decisions about the planning and implementation of a key worker service are indicated by Mukherjee et al (2000). Key workers need to focus on achieving the outcomes families with disabled children want. Research suggests that many outcomes desired by disabled children are similar to those which non-disabled children want. Rabiee et al (2005) found that the disabled children they interviewed wanted to be healthy, have friends and interests, be part of the local community, to acquire social and self-care skills and future independence, to feel confident and respected by others and to experience success and achievement. This is also what their parents wanted for them. However, there was a hierarchy of desired outcomes for the disabled children in the sense that the achievement of some outcomes was essential before it was possible to work towards other desired outcomes. For example, for children with complex health needs, being comfortable and not in pain is necessary before they can consider having friends and playing a part in the local community. This interrelationship between desired outcomes highlights the importance of multiagency partnerships, including key



working, if disabled children and their parents are to achieve what they want (Rabiee et al, 2005).

Conclusion On the basis of research evidence, current government policy promotes key working as a way of coordinating services in order to improve outcomes for families with a child with complex needs. It is the role of key workers to meet families’ needs for information. Key workers must also identify and address the needs of all family members and provide them with the emotional and practical support they require. It is part of a key worker’s function to assist families in their dealings with agencies, while acting as an advocate for families, if necessary (CCNUK, 2004). Mukherjee et al (2000) found that the elements of a key worker service which are valued by families include proactive, regular contact within the context of a supportive, open relationship, together with a family-centred, rather than a child-centred approach. They reported that families value having one person whom they can contact who will work across agencies. The key worker should recognise the families’ strengths and that families want them to work to represent the families’ interests rather than those of employing agencies. To fulfil their role effectively key workers need to develop a broad spectrum of skills and knowledge. Research (Mukherjee et al, 2000; Greco et al, 2005) indicates that, in order to be successful, key workers need basic counselling and communication skills, and must work in partnership with parents and children, respecting their expertise. Burke (2004) points to the need for professionals to be prepared to act as advocates for children; this includes both disabled children and their siblings. Key workers require extensive knowledge about disability and relevant services (Mukherjee et al, 2000; Greco et al, 2005). The systems within which key workers operate affect how effectively they can do their jobs. Key workers must be clear about what their role entails and need to be familiar with the processes and procedures of the organisation in which they work. In order to develop a service which focuses on families, they must document unmet need and encourage families’ participation in service development. Recent research (Rabiee et al, 2005) showing the interdependency of outcomes desired by families with severely disabled children highlights the importance of multiagency working. The role of key worker is a complex one for which there is no blueprint. Local services differ in their patterns of organisation and methods of operation. Key workers need to be flexible and to be able to learn and adapt rapidly in what is a developing field. There are gaps in the knowledge base underpinning key working. We do not yet know which model of key working is most effective, although we do know which organisational features promote successful outcomes for families. There is a need for internal and external evaluations of different models of key working. Key workers need to be ready to alter and improve their practice in the light of experience, the results of evaluations and new research. Sometimes there may be tensions involved in carrying out the multiple demands of the key worker’s role. Careful assessments are necessary in order to carry out the role effectively and with sensitivity to families’ feelings. Key workers must listen to all family members, while remembering that under the Children Act 1989, the welfare of the child is paramount.



There is a good deal of consistency in the information available about good practice in key working. However, there is something of a mismatch between what is agreed to be good practice and what we know from research evidence is the reality for many families with a child with complex needs. The challenge for the future is to extend to all families needing a key working service, care coordination which meets the standards recommended by research and required by government policy.

Activities What follows are two activities that relate to the topics raised in this chapter. These activities support your learning in this area and you should consider using these activities to support your reflective diary entries. Activity 1: What does a key worker do? If you are a key worker, discuss your role with one of the families for whom you act as a key worker. Ask them if they can describe your professional role and the impact your support has on them as a family. Discuss the outcomes of this in your reflective diary If you are not a key worker, ask someone who is a key worker to describe what they do in their professional role and the impact they think it has on the families with whom they work. Discuss the outcomes of this in your reflective diary. Activity 2: What difference does key working make? “Key working is one element in a drive to improve multiagency working so as to provide ’joined up’ services to families.” This is a quote taken from this chapter, Having read this chapter and thinking about your own experiences, use your reflective diary to outline your thoughts about this quote and how it applies to your own experiences.



References Balls, E. (2006) Disabled Children’s Assessment and Services, House of Commons Hansard Debates, 14th February (pt 6), Column 1284. Beresford, B. (1995) Expert Opinions: A national survey of parents caring for a severely disabled child, Bristol: The Policy Press. Beresford, B. and Sloper, P. (1999) Information Needs of Chronically Ill or Physically Disabled Children and Adolescents, York: Social Policy Research Unit, University of York. Burke, P. (2004) Brothers and Sisters of Disabled Children, London: Jessica Kingsley Publishers Ltd. Care Co-ordination Network UK (2004) Key Worker Standards, York: Care Co-ordination Network, available at http://www.ccnuk.org.uk Carpenter, B. (2000) Sustaining the family: Meeting the needs of families of children with disabilities, British Journal of Special Education 27, 3, 135–144. Cavet, J. and Sloper, P. (2004) Participation of disabled children in individual decisions about their lives and in public decisions about service development, Children and Society 18, 278–290. Chamba, R., Ahmad, W., Hirst, M., Lawton, D. and Beresford, B. (1999) On the Edge: Minority Ethnic Families Caring for a Severely Disabled Child, Bristol: The Policy Press. Connors, C. and Stalker, K. (2003) The Views and Experiences of Disabled Children and Their Siblings, London: Jessica Kingsley Publishers Ltd. Cunningham, C. and Davis, H. (1985) Working with Parents: Frameworks for Collaboration, Milton Keynes: Open University Press. Dale, N. (1996) Working with Families of Children with Special Needs, London: Routledge. Davis, H. (1993) Counselling Parents Of Children With Chronic Illness Or Disability, Leicester: The British Psychological Society. Davis, H., Day, C. and Bidmead, C. (2002) Working In Partnership With Parents: The Parent Adviser Model, London: Harcourt Assessment. Department for Education and Skills (2006) The lead professional: Practitioners’ guide, Nottingham: Department for Education and Skills Publications. Department for Education and Skills (2005a) Lead Professional Good Practice Guidance for children with additional needs Nottingham: Department for Education and Skills Publications Department for Education and Skills (2005b), Common Assessment Framework, Nottingham: Department for Education and Skills Publications, available at www.everychild matters.gov.uk/caf/


http://www.ccnuk.org.uk/metadot/index.pl?id=2191&isa=Category&op=show


Department for Education and Skills and Department of Health (2003) Together from the Start – Practical guidance for professionals working with disabled children (birth to third birthday) and their families, Nottingham: Department for Education and Skills Publications. Department for Education and Skills and Department of Health (2006) Working in Partnership through Early Support: training programme – Trainers’ guide (trial version), available at http://www.earlysupport.org.uk/ Department of Health (2004a) Executive Summary, National Service Framework for Children, Young People and Maternity Services, London: Department of Health Publications. Department of Health (2004b) Disabled Child Standard, National Service Framework for Children, Young People and Maternity Services, London: Department of Health Publications. Department of Health (2005) Complex Disability Exemplar, National Service Framework for Children, Young People and Maternity Services, London: Department of Health Publications. Eagle, M. (2005) Extract from Speech at CCNUK Conference, York: Care Co-ordination Network, available at http://www.ccnuk.org.uk/ Early Support (2004) Professional guidance, Nottingham: Department for Education and Skills. Edwards, M. and Davis, H. (1997) Counselling Children With Chronic Medical Conditions, Leicester: The British Psychological Society. Greco, V., Sloper, P., Webb, R. and Beecham, J. (2005) An Exploration of Different Models of Multiagency Partnership in Key Worker Services for Disabled Children: Effectiveness and Costs, Nottingham: Department for Education and Skills. Liabo, K., Newman, T., Stephens, J. and Lowe, K. (2001) A Review of Key Worker Systems for Disabled Children and the Development of Information Guides for Parents, Children and Professionals, Cardiff: Wales Office for Research and Development National Assembly of Wales. Mitchell, W. and Sloper, P. (2002) Information that informs rather than alienates families of disabled children: developing a model of good practice, Health and Social Care in the Community 10, 2, 74–81. Mukherjee, S., Beresford, B. and Sloper, P. (1999) Unlocking Key Working, Bristol: The Policy Press. Mukherjee, S., Sloper, P., Beresford, B. and Lund, P. (2000) A Resource Pack: Developing a Key Worker Service for Families with a Disabled Child, York: Social Policy Research Unit, University of York. Prime Minister's Strategy Unit (2005) Improving the life chances of disabled people, London: Strategy Unit, Cabinet Office.


http://www.earlysupport.org.uk/

http://www.ccnuk.org.uk/metadot/index.pl?id=2465&isa=Newsitem&op=show


Rabiee, P., Sloper, P. and Beresford, B. (2005) Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication, Health and Social Care in the Community 13, 5, 478–487. Scottish Executive (2005) Delivering for Health, Edinburgh: Scottish Executive. Sloper, P. (2004) Facilitators and barriers for co-ordinated multiagency services, Child: Care, Health and Development 13, 6, 571–580. Strohm, K. (2002) Siblings, London: David Fulton Publishers Ltd. Townsley, R., Abbott, D. and Watson, D. (2004) Making a difference? Exploring the impact of multiagency working on disabled children with complex health care needs, their families and the professionals who support them, Bristol: The Policy Press. Watson, D., Townsley, R., Abbott, D. and Latham, P. (2001) Working Together? Multiagency working in services to children with complex health care needs and their families, Bristol: Nora Fry Research Centre, University of Bristol. Welsh Assembly Government (2004) National Service Framework for Children, Young People and Maternity Services in Wales (Consultation document), Cardiff: Welsh Assembly Government.


Best Practice In Key Working[1]

Documents

Transcript of Best Practice In Key Working[1]