Hand to mouth existence

Deafblind children have been entitled to specialist assessments
and support since 2001, when the government issued statutory
guidance on services.(1)

Under the guidance, councils must identify, make contact with and
keep a record of all deafblind people in their area. This should
include those with other disabilities such as learning difficulties
who may be registered with other services.

Councils must also ensure:

• An assessment is carried out by specifically trained people.
  This may mean bringing in expertise from outside the council.
• Services are provided that include one-to-one support by
  trained staff where needed, including intervenors.
• Ensure one member of senior management has overall
  responsibility for deafblind services. A third-tier officer with
  strategic responsibility for disabled children would be
  suitable.

Officially, there are 23,000 deafblind people but reports from
councils suggest twice this number or more. All these require
one-to-one support to assist with mobility, access to information
and communication. Many councils are now developing communicator
guide services suitable for those who have acquired deafblindness.

But those who are born deafblind are likely to need an intervenor,
who gives one-to-one support to enable the child to interact with
the world. They will follow developmental programmes to encourage
communication and language development, and to help the child
understand the world and develop independence.

Yet deafblind charity Sense continues to hear stories of families
fighting for even the most basic support, and intervenors rarely
support deafblind children outside of school hours. Consequently,
children’s services are still failing some of the most
disadvantaged disabled children.

This is because most councils have focused their efforts to
implement the guidance on adults – who account for most
deafblind people. Managers responsible for developing sensory
services are usually based in adult services and whether
sensory-impaired children are the responsibility of the sensory
team or the children’s disabilities team is often unclear.

There are several reasons why effective service planning for
deafblind children is a challenge. Deafblindness among children is
uncommon – estimated at about three in every 100,000 children
or about 4,400. Many councils, then, will only have to cater for
one or two deafblind children.

Our sight and hearing account for 95 per cent of what we learn
about the world around us. If these two senses are significantly
impaired, learning becomes a challenge. Added to this, the common
causes of deafblindness in children often lead to additional needs
such as learning difficulties, balance problems, health problems
and physical disabilities.

The social needs of deafblind children are often inadequately
addressed or simply ignored. The result is that many deafblind
children are living lives which are much more restricted than they
need to be. They are missing out on opportunities to learn, to gain
confidence and to join in their community life. Their families are
faced with the demanding task of caring for a child who needs
constant one-to-one attention. Parents become exhausted and
siblings may feel neglected. As children become older, the
involvement of their parents in their social activity is less and
less appropriate.

Sense has campaigned for the guidance to be effectively implemented
in children’s services since it was issued. In October 2003,
a group of deafblind children and their families handed in a
charter to the then minister for disabled children Baroness Ashton
calling for equal rights with other children. This led to the
Department for Education and Skills providing Sense with the
funding to produce a toolkit setting out the implications of the
guidance and how to provide quality services for deafblind
children.(2)

The toolkit is aimed at children’s services managers. It sets
out the requirements of the guidance, how assessment should be
organised, what specialist services might be suitable and how to
provide them. It provides checklists for assessing local authority
performance, good practice examples and lists of resources and
organisations for more information and support.

Specialists need to assess deafblind children to understand the
complex effects of a dual sensory loss on a child’s
development and the way this interacts with other disabilities.
Because of the low numbers of deafblind children, many councils
will need to bring in specialists from other local authorities or
outside agencies and should know where to find such expertise.
Delays in assessment lead to delays in services that can have a
long-term detrimental effect on a child’s development.

Yet a survey of local authorities carried out by Sense showed
variation in who might assess a deafblind child.(3) Only one in
eight mentioned specialists and one replied that they would use
communicator guides, which are not suitable. The survey showed that
less than one in five authorities were providing an intervenor
service, and of those only about one in four provide the service to
children outside school.

Joint working between health, social care and education should
benefit children with complex disabilities such as multi-sensory
impairment. But this will not occur unless councils ensure that the
complex needs of this group are met. The new children’s
directors are ideally placed to ensure this happens.

Sue Brown is head of campaigns and public
policy for Sense. She has been campaigning for improvements in
services for deafblind children and working with local authorities
to provide them with information about how to do this.

Training and learning
The author has provided questions about this article to
guide discussion in teams. These can be viewed at www.communitycare.co.uk/prtl
and individuals’ learning from the discussion can be
registered on a free, password-protected training log held on the
site. This is a service from Community Care for all GSCC-registered
professionals.

Abstract
This article looks at reasons why children’s
services are failing deafblind children and how they can be
improved. It sets out the relevant government guidance, the type of
service which is required and where authorities can go for support
in delivering services.

References
(1) Department of Health, Social Care for Deafblind Adults
and Children, 2001
(2) G Loosemore-Reppen, Reaching Out: A Toolkit for Deafblind
Children’s Services, Sense, 2004
(3) Sense, Local Authority Deafblind Services Survey, 2004.
Available on Sense website at www.sense.org.uk

Further information

• H Murdoch, Early Intervention for Children who are
  Deafblind, 2002. Available on Sense website
• B Miles, M Riggio, Remarkable Conversations: A Guide to
  Developing Meaningful Communication with Children and Young Adults
  who are Deafblind, Perkins School for the Blind, 1999

Contact the author
Sue.brown@sense.org.uk or
call 020 7561 3401