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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