Working in Partnership through Early Support: distance learning text

Transcription

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
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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
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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 ’nondesignated’ 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
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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.)
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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).
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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.
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•
•
•
•
•
•
•
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.
2.
3.
4.
Providing information.
Identifying and addressing the needs of all family members.
Providing emotional and practical support as required.
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).
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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
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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 interrelatedness 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
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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
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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:
Ö The disabling social and physical barriers which are adversely affecting
the child’s access to a good quality of life.
Ö 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:
Ö Encouraging the earlier identification of children with complex needs who
require service coordination.
Ö Improved information sharing between agencies.
Early Support
12
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).
Early Support
13
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
Early Support
14
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 approach 1
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
Early Support
15
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
Early Support
16
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 upto-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 knowledge 2
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
Early Support
17
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).
Early Support
18
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
Early Support
19
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 childcentred 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.
Early Support
20
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.
Early Support
21
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
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Care Co-ordination Network UK (2004) Key Worker Standards, York: Care Coordination Network, available at http://www.ccnuk.org.uk
Carpenter, B. (2000) Sustaining the family: Meeting the needs of families of children
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Chamba, R., Ahmad, W., Hirst, M., Lawton, D. and Beresford, B. (1999) On the
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Connors, C. and Stalker, K. (2003) The Views and Experiences of Disabled Children
and Their Siblings, London: Jessica Kingsley Publishers Ltd.
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Early Support
22
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Early Support
23
Rabiee, P., Sloper, P. and Beresford, B. (2005) Desired outcomes for children and
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Early Support
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Working in Partnership through Early Support: distance learning text

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