Brighter beginnings

For a new parent, learning that their child is disabled is
usually a profoundly shocking experience. How that news is conveyed
to them, and how they feel at the time is something they will
remember for the rest of their lives and can influence how well
they are able to bond with their child.

For professionals too, diagnosing a severe disability in a child
and telling the parents may be a distressing experience for which
they feel ill-prepared.

Together from the Start, a consultation issued jointly by the
Department for Education and Skills and the Department of Health
sets out draft guidance for professionals to help them deal with
difficult issues such as this, and more generally to improve
services for very young disabled children and their
families.1 It has been drawn up in close consultation
with a working party whose membership includes experts from the
voluntary sector, health and education.

Lesley Campbell, national children’s officer for Mencap and member
of the working group, explains: “It’s about setting families off on
the right path. All the evidence shows that if we can get this bit
right, families cope better and feel more positive about using

The guidance also covers key worker systems and multi-agency
working, provision of information to parents and planning a
family-centred approach to service delivery. At the moment,
particularly where a child has multiple disabilities, families may
be confronted with a bewildering array of disparate services at
different clinics and at different times. They may have to deal
with as many as 20 different professionals asking the same, often
distressing questions again and again. Part of the vision of
Together from the Start is that families will enter a unified,
family-friendly system with a key worker to guide them through the
complexities of the services their child may need and help them
find relevant information and support.

Julie Jennings, early years development officer at the Royal
National Institute for the Blind says: “No one can be expert in all
areas for children with complex needs, but there is a degree of
overlap. A key worker system can take some of the stress out of the
early days. The aim is to work together and see the child as a

The guidance is not only for professionals working in specialist
services, but for people in mainstream early years and health
services which have the potential to enrich the lives of disabled
children. Campbell believes an important message is the need to
include families who at present don’t use services, such as people
from some ethnic minority groups and people facing social and
practical difficulties as well as their child’s disability.

“Both specialist and mainstream services need to recognise that
there are large numbers of families who never access them,”
Campbell says. “It may be that the child is first identified as
having a development delay which then gets called a learning
difficulty. One or both parents may themselves have a learning
difficulty. The guidance focuses on the kinds of skills which staff
need to work with people. It encourages them to think about how
they can design services to make them more friendly to
hard-to-reach families.”

A second consultation from the DfES and the Royal National
Institute for Deaf People (RNID) focuses on the need to develop
early support services for deaf children and their
families.2 In most parts of the country, deafness is
often not diagnosed until a child is around 18 months old and in
around a quarter of cases is not picked up until the child is three
and a half. With the implementation of universal newborn hearing
screening, deafness can be identified as early as two months.
Universal screening is being piloted in 20 areas and is intended to
cover the whole of the UK by 2006.

As Anne-Marie Hall, education development manager at the National
Deaf Children’s Society explains, early diagnosis has many
benefits. She says: “You can’t over-estimate the difference early
diagnosis makes, especially for communication and language
development. With the right support and encouragement you would
expect to see age-appropriate language and development. With later
diagnosis, you’re in a catch-up situation.” A deaf child who is not
diagnosed until toddlerhood misses out on vital early language and
communication development. This often leads to poor communication
between child and family and perhaps behaviour problems in the

For early identification of deafness to occur services need to work
with much younger children. But provision of early years support is
patchy. Services are best developed in areas where universal infant
screening has been available for some years.

Hall explains: “The challenge for teachers of the deaf is to work
with parents of young children. Teachers may be going into the home
once a week but parents are there all the time. It’s about giving
support and information around choices for communication and what
they can do to facilitate language and communication.”

In parallel with the two consultations, the DfES has instigated an
early support pilot programme to identify examples of good practice
which can then be refined and disseminated to practitioners. John
Ford, programme director, is on secondment from the DfES to work
closely with the RNID and National Children’s Bureau. He explains
that the intention is to develop a “toolkit” for good practice to
underpin the generic 0-2 guidance and the development of early
intervention services for deaf children and their families.

The toolkit, to be published next spring, will cover strands
including developing multi-agency services, involving parents in
the development of services, information for parents, effective key
worker systems plus an audit mechanism so services can test their
own provision. Ford says: “The aim is to look at the good practice
out there and develop some common principles that should be
followed in providing integrated services based around the needs of
individual families and children with low incidence

He adds: “There may be more than one way of doing this depending,
for example, on whether it’s a rural area with high travel costs or
an area with many ethnic minority families. There might need to be
a different approach for visual impairment or for other specific
disabilities.” The list of projects chosen to receive grants to
participate in the pilot programme will be announced in the

The two sets of guidance and the toolkit will feed into the
forthcoming national service framework for children. Members of the
working group hope this will be supported by a generous spending
review settlement next year. However, says Jennings, new ways of
working do not necessarily mean more expenditure. She describes how
Cambridgeshire has evaluated its multidisciplinary assessments for
young children with low vision and found they are cost-effective.
“It was a better use of existing resources. Normally, families
would be expected to attend lots of separate assessments. Families
found it helpful because they could talk to all the professionals
at once and it led to an agreed joint plan.”

On the other hand, aspects of the guidance are unlikely to be
implemented unless more resources are forthcoming. Campbell says:
“Some services can seem very rigid in how they do things and need a
radical redesign. The guidance provides some pointers to do that.
But without new money some of the recommendations seem like an
idealistic dream.”

Together from the
,DfES and DoH, 2002, from

2 E Andrews, Developing
Early Intervention/Support Services for Deaf Children and their
, RNID/DfES, 2001

Fragmented services add stress

“On first visiting Faye, her mother gave me a plastic counter
and explained how I should use it. There were eight professionals
trying to offer support. There was little time in the week for
mother to enjoy Faye and none to at all to shop, wash or do the
housework. If Faye’s mother felt I had something positive to offer
she would give me a counter to push through the letter box on my
next visit. Those professionals who did not receive another counter
were not allowed back into the house. Faye’s mother made all of us
think about what it means to provide joined up services.”

Source: Together from the Start

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