Councils in England and Wales have to follow guidance on how to provide services for deafblind people. This guidance, Social Care for Deafblind Children and Adults, usually referred to as the Deafblind Guidance, was issued by the Department of Health in 2009 and the Welsh Assembly Government in 2001.

The guidance is to make sure deafblind people receive the support and services they require from their local authority, and it must be followed. It was introduced after years of campaigning by deafblind people and charities, including Sense.

The Guidance asks local authorities to:

• Identify, make contact with and keep a record of deafblind people in their catchment area (including those who have multiple disabilities that include dual-sensory impairment
• Ensure that an assessment is carried out by a specifically trained person / team, that is equipped to assess the needs of a deafblind person, in particular to assess the need for one-to-one human contact, assistive technology and rehabilitation
• Ensure that appropriate services are provided to deafblind people, who are not necessarily able to benefit from mainstream services, or those services aimed primarily at blind people or deaf people who are able to rely on their other senses
• Ensure they are able to access specifically trained one-to-one support workers for those people they assess as requiring this
• Provide information about services in formats and methods that are accessible to deafblind people
• Ensure that one member of senior management includes, within his / her responsibilities, overall responsibility for deafblind services

Who does this apply to?

The Guidance defines deafblindness widely and says: "Persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility.” This definition means that anyone who has both a hearing loss and a sight loss that cause them problems in everyday life is covered by the guidance. People do not have to be completely deaf and blind.

Your right to assessment

An assessment is your key to getting what you need from your local authority. Before the local authority will provide you with any service, they have to carry out an assessment.

If you are disabled you have a legal right to an assessment and you can request this at any time through your social worker (if you have one), or by contacting your local social services department. Regardless of whether you are receiving services already or this is your first assessment, you should ask to be assessed in accordance with the Deafblind Guidance.  

The assessment will consist of you meeting with the person who will be assessing you, usually a social worker, once or on several occasions. The person assessing you will probably use an assessment form. You can ask for accessible (i.e. in a format you can use, such as braille) copies of this before the first meeting. This will give you an idea of the sort of questions you may be asked.

The assessment must be made by a specialist trained in deafblindness and should include assessing your needs in relation to:

• Communication
• One-to-one support and social interaction
• Support with mobility
• Assistive technology
• Rehabilitation
• Your current and possible future needs

The result of the assessment will be a document that should clearly set out your needs, and how the local authority plans to meet them. You should get an accessible copy of this. If you disagree with any part of this you should contact social services and explain what you disagree with. Social services have a duty to meet needs that they have assessed - even if that means setting up new services or training new staff.

You should be clear about what they think you need (e.g. help with shopping, reading letters, or going out), and about how they are going to meet this need.

Things to remember

• Assessments can seem intimidating, but the expert in your problems is you
• Decide for yourself before the assessment what support you need and what services you want, and tell the person assessing you
• You can ask Sense for support in explaining what you need, or what support is necessary to help you
• Remind whoever is assessing you that they have to comply with all the requirements set out in the government guidance. You can give them a copy of the complete guidance, which they may not be aware of
• Ask the person assessing you what their training is. The guidance requires them to be
  specifically trained in deafblindness. Give them a copy of the guidance, and tell them they can contact Sense for information, advice and training
• If you have any problems or questions, get in touch with Sense. We can support you, offer advice and information, and help ensure you get the services you need

Your right to one-to-one support

The social services department within your local authority has a duty to provide you with support if you need it.

In order for social services to determine if you are eligible for a service, they will carry out an assessment of your needs. The Government's new guidance says that social services must assess you to see if you need one-to-one support. It also says that they must ‘ensure they are able to access specifically trained one-to-one support workers for those people they assess as requiring one’.

In practice, this means that a part of your assessment must consider if you would benefit from one-to-one support and if there are things that you cannot do without this support. The authority must also be able to provide ‘specifically trained one-to-one support workers’. This means people with appropriate training and qualifications. These people fall into three main categories:

• Communicator guides: they usually work with people who have become deafblind later in life, offering support that the deafblind person needs to live independently. They have qualifications from Signature (formerly CACDP)
• Interpreters: they act as a communication link between the deafblind person and other people, using the deafblind person’s preferred method of communication. They have qualifications from Signature (formerly CACDP)
• Intervenors: help children and adults who were born deafblind to learn by offering them sensitive, individualised one-to-one attention

Signature (formerly CACDP) maintains a register of qualified interpreters and communicator guides.

The National Organisation of Intervenors maintains a register of intervenors. Please contact Jenny Fletcher for more information.

Your rights to information

The  Equality Act (2010) makes it clear that every organisation that provides services to the public must provide that information in a variety of formats so that it is accessible to disabled people.

The Deafblind Guidance also makes it clear that local authorities have a duty to provide ‘information about services in formats and methods that are accessible to deafblind people’. The guidance goes on to list possible methods of communication as:

• Clear speech and lipreading
• British Sign Language or a sign system e.g. Sign Supported English
• Visual frame signing, close-up signing
• Hands-on signing
• Braille and Moon
• Block alphabet
• Deafblind manual alphabet
• Note writing
• Electronic communication (with braille output or large font on screen)
• Individual's own personal signs
• Tadoma (gaining additional information from the vibrations of the speaker's vocal cords)
• A combination of any of the above

Your rights to social services for your deafblind child

All deafblind children are considered as children in need under the Children Act 1989. In practice this means that social services are responsible for ensuring:

• The identification of deafblind children on the Social Services Disability Register
• The child and their family are offered an assessment based on the Framework for the Assessment of Children in Need and their Families
• The quality of assessments encourages an active partnership between mainstream and specialist services working together to manage disabled children's inclusion in family life, education and community services

If your child requires one-to-one support to participate fully in family life and the community, social services must provide that support. Your child may already be provided with support to access education (this is called a statement - you can find out more on our page on
supporting children with special educational needs). Asking to be assessed for additional community-based services will not affect your child's educational support. You can use the statement as evidence of your child's need for one-to-one support.

When children are assessed this should carried out by someone who is specifically trained to understand their needs as a deafblind child.

Assessing a deafblind child is a specialised area and different from assessing a deafblind adult. Ask about the qualifications and experience of the people assessing your child. The services your child is assessed as needing should be provided by people who have the appropriate training and skills. These services may include the need for one-to-one support and / or the need for short breaks / respite care.

Detailed information about the Deafblind Guidance

The Department of Health reissued Social Care for Deafblind Children and Adults LAC(DH) 2009(6) in June 2009. You can download the full guidance at: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/LocalAuthorityCirculars/DH_101114

In Wales the Guidance is National Assembly for Wales Circular No.10/01 and is available at:

http://wales.gov.uk/publications/circular/circulars2001/NAFWC102001?lang=en

You can also contact the Sense Information and Advice service to request a copy of the Guidance.