The families of disabled children can spend so much time dealing
with agencies it prevents them from caring. Suzy Braye explains how
the appointment of key workers should provide better co-ordination
Appointing key workers for disabled children’s families
promises to resolve co-ordination problems between agencies. How
can such systems work to best advantage?
There have been developments recently in the appointment of key
workers to co-ordinate multi-agency responses to disabled children.
Such services can help families overcome the challenge of
negotiating their way through a maze of provision that includes
health, social services, education departments, schools and
voluntary agencies, often all at once. Carers of disabled children
have consistently reported:
– Confusion about which agency and which profession provides
– Duplication of services.
– Gaps that no one wants to fill.
– Time wasted knocking on doors, undergoing assessment and being
passed from one set of professionals to another.
– Inordinate effort consumed in securing even most basic
provisions, such as play facilities for children.
– Reliance on other families as sources of information and
Little appears to have changed in families’ experiences,
even in the decade following the Children Act 1989, which attempted
to provide a legal framework for better co-ordination of
information and services.
The problem is particularly acute for the families of children
who have complex multiple needs involving continuing health care as
part of daily living.
Key worker systems, while not providing the “one-stop shop” that
families might prefer, go some way to ensuring that advice and
guidance are available.
They also offer a potential channel for holistic assessment and
review of needs, co-ordinating the involvement of specialists with
a narrower focus.
It is vital, however, that the key worker does not become just
another person at the door adding to, rather than managing, the
complexity. How then might the benefits of key worker systems be
– It is important to involve those who will be using the service
in its development. Parents, carers and disabled children have
ideas about what works, and might wish to be actively involved.
Their participation must be sought from the beginning.
– The position of the key worker within the professional and
agency network must be negotiated and clarified. Does a key worker
located within one agency have the power to commit resources from
– Management of a service might usefully include representation
from all stakeholders in disabled children’s provision –
families and agencies alike. If accountability is held by a
partnership, and responsibility for the success of the service is
shared, its position within the network will be more secure.
– The role of the key worker must be clearly spelled out.
Particularly important is clarity about who the service is for.
Different members of the same family do not always agree about
needs and priorities. Disabled children and their parents may have
– Key workers need a clear understanding of the responsibilities
of all agencies in relation to disabled children and their
families, including the complex legal mandates behind health,
social care and education.
– Good relationships between professionals in a locality are
often what makes the service network tolerable for families. Where
these do not exist, a forum for resolving conflict will be
necessary. It is important to clarify whether a key worker holds
this role, and if so, what power they have to achieve resolution in
– The model of disability that underpins a key worker service
must locate medical and health needs within a broader social model,
with a focus on removing the barriers to disabled children’s
participation in society.
Key worker involvement will build on strengths rather than
deficits, responding to health care needs in ways that promote
inclusion in social and community networks.
Suzy Braye is reader in social work, Staffordshire