Deafblind Services Consultation.
LOCAL AUTHORITY CIRCULAR LAC(2001)
TITLE: SOCIAL CARE FOR DEAFBLIND CHILDREN AND ADULTS.
1.1 The Guidance which follows is issued under Section 7 of the Local Authority Social Services Act 1970. It responds to concerns highlighted by the Department of Health's recent deafblindness consultation exercise.
1.2 At least 40 people per 100,000 are deafblind. Many are not known to their local social services authority. Of those who are in contact with social services, not all are identified as having dual sensory impairment nor are they in receipt of appropriate services. This applies to both adults and children.
1.3 The Guidance is of relevance to all local social services staff, including those who provide services under contract to the local social services authority.
1.4 Further information is available on the Department of Health website Www.doh.gov.uk/scg/deafblind, or from the enquiry address below, for those without access to the Internet.
2.1 Authorities are asked to take the following action:
identify, make contact with and keep a record of deafblind people in Their catchment area (including those who have multiple disabilities including dual sensory impairment);
ensure that when an assessment is required or requested, it is carried out by a specifically trained person/team, equipped to assess the needs of a deafblind person - in particular to assess need for one-to-one human contact, assistive technology and rehabilitation;
ensure services provided to deafblind people are appropriate, recognising that they may not necessarily be 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 one;
provide information about services in formats and methods that are
accessible to deafblind people; and
ensure that one member of senior management includes, within his/her responsibilities, overall responsibility for deafblind services.
3. CANCELLATION OF CIRCULARS
3.1 This Circular should be cancelled on 28 February 2006.
Enquiries about this Circular should be made to:
DEPARTMENT OF HEALTH SOCIAL CARE FOR DEAFBLIND CHILDREN AND ADULTS POLICY GUIDANCE.
In the Autumn of 2000, the Department of Health completed a consultation exercise looking at social care services for deafblind children and adults. A consultation group was convened, including representatives from Deafblind UK, Sense, RNID, RNIB, ADSS, LGA and service users. In addition comments were invited, via the Department of Health website, and received from councils, other service users and others with an interest. The exercise concluded that the needs of deafblind people are often not identified nor are those in need of community care always in receipt of appropriate services. It has become clear that more has to be done to identify, correctly assess and provide appropriate services for people with dual sensory impairment. They are a unique group, who cannot always benefit from mainstream services or services for people who are either blind or deaf (but able to compensate partially for the loss of one sense by using the other). This Guidance is responding to those concerns and the recommendations put forward by the consultation group.
Deafblindness - Definitions and Descriptions
Whilst there is no generally accepted definition of deafblindness there is a working description that has been accepted over many years.
"Persons are regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility" (Think Dual Sensory, Department of Health, 1995).
Deafblindness can be found in all age groups, including children, but the incidence is greatest in older adults.
The term dual sensory loss can be used interchangeably with deafblindness denoting the fact that combined losses of sight and hearing are significant for the individual even where they are not profoundly deaf and totally blind. It is the way in which one sensory impairment impacts upon or compounds the second impairment, which causes the difficulties, even if, taken separately, each single sensory impairment appears relatively mild.
Many people do not define themselves either as deafblind or having dual sensory loss. They may use such phrases as "I don't see too well or hear too well". They do, however, describe their vision and hearing loss in terms which mean that they do have significant difficulties in their day-to-day functioning.
Congenital and Acquired Deafblindness
Four basic groups of people experiencing deafblindness have been identified:
those who are hearing and sight impaired from birth or early childhood
those blind from birth or early childhood who subsequently acquire a hearing loss that has a significant functional impact
those who are profoundly deaf from birth or early childhood who subsequently acquire a significant visual loss
those who acquire a hearing and sight impairment later in life, that has a significant functional impact.
The impact of dual sensory impairment on an individual will vary according to the learning opportunities they have had. People who are born deafblind will have little or no formal language and only limited understanding of the world because they have never been able to watch/listen to other people and the things going on around them. In contrast people who acquire their deafblindness may have the advantage of remembered sight and /or hearing and are more likely to have had access to language learning. Methods of communication will therefore vary, and may include:
Clear speech and lip reading
British Sign Language or a sign system e.g. Sign Supported English Visual
Close-up Signing, Hands-on Signing
Braille and Moon
Deafblind Manual Alphabet
Eectronic communication (with Braille output or large font on screen)
Individual's own personal signs
Tadoma (gaining additional information from vibrations of the speaker's vocal chords) a combination of any of the above
In all cases those who provide information, or are involved in ssessment of, or in service provision for deafblind people, should take the initiative to establish maximum communication. This will ensure that individuals, as well as those who care for them, are as fully engaged as possible in assessment, planning and provision. It should be recognised that such involvement may take time to establish. There is, therefore, clear value in noting preferred method of communication on case notes etc.
In addition to the issues surrounding locating and contacting deafblind people not known to councils, often people with dual sensory impairment who are in receipt of social services are not recognised as being deafblind. This can be because an initial assessment was carried out when only one sense was impaired or because both senses have deteriorated since the care package (including residential placement) has taken place. It can also be because other disabilities (such as learning disability) 'mask' the deafblindness. A particular approach for helping non-specialists recognise and understand the impact of deafblindness is to provide a set of descriptors, one for people born deafblind and the other for those who acquire the disability. This can be important, as the appropriate type of intervention needed may be different for the two groups. Descriptors for both groups can be found at Annex A.
Training in awareness and communication is available from CACDP, Sense and Deafblind UK. More detailed information is available on the website www.doh.gov.uk/scg/deafblind, or from the address at the end of this circular.
Social services for disabled adults are generally provided under section
29(1) of the National Assistance Act 1948 in conjunction with section 2 of the Chronically Sick and Disabled Persons Act 1970. This provides that local councils may, and in certain circumstances must, make arrangements for promoting the welfare "of persons aged 18 or over who are blind, deaf or dumb or who suffer from mental disorder of any description and other persons aged 18 or over who are substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be prescribed by the Minister."
Councils with social services responsibilities (referred to throughout
this guidance as "councils") also have a duty, under section 1(1) of the Chronically Sick and Disabled Persons Act 1970, to inform themselves of the number of persons in their area to whom Section 29 of the National Assistance Act 1948 applies.
Social services for children are generally provided under the Children Act 1989, primarily Section 17 and Schedule 2. Councils are required to provide a range of services for children in need, which includes disabled children.
Status of the Guidance
The following Guidance is issued under Section 7(1) of the Local Authority Social Services Act 1970. It is intended to be complementary to the requirements of the Children Act and Community Care legislation and has been written so as to add to both the "Framework for the Assessment of Children in Need and their Families" (Department of Health et al, 2000) and 'Towards Fair Access to Adult Social Care Services', due to be published after this Guidance.
Councils are asked to identify, make contact with and keep a record of deafblind people in their catchment area. In doing so they should be aware that many of those who are known to authorities as having learning disabilities, multiple disabilities or problems associated with age, may also have dual sensory impairment. (Suggestions as to how they might go about this will be found on the website). Deafblind children should be included on the Register of Disabled Children required by the Children Act 1989 (schedule 2, paragraph 2).
A letter from Denise Platt, Chief Inspector, Social Services
Inspectorate and Sheila Adam, Deputy Chief Medical Officer (October 2000) reminded those in social services and health authorities of the role form BD8 can play in bringing those in need of services in contact with their council. It stressed the need to complete the form in as fully as possible, including the section relating to additional disabilities, and the need to process such forms quickly. It called for social services to give priority in making contact with patients identified, in part 3 of the BD8, as also having significant hearing loss. It is recognised, however, that only a relatively small proportion of those who could register as blind or partially sighted chose to do so.
Deafblind children (many of whom will also have additional disabilities) will often have been under the care of local paediatric services since birth, although the full extent to their disability may not become apparent until later. They require follow-up by the child development team with access to specialist audiology and ophthalmology services.
Local arrangements should ensure early referral for support to social services and to voluntary organisations as well as to the Education Authority (SEN Code of Practice). Deafblind children are considered as Children in Need under the Children Act 1989. It should be possible to identify deafblind children on the Social Services Disability Register.
The child and their family should be offered an assessment based on the Framework for the Assessment of Children in Need and their Families (Department of Health et al, 2000) in order to determine what services it will be most appropriate to offer. Good quality assessments will encourage active partnerships between mainstream and specialist services working together to manage disabled children's inclusion in family life, education and community services ('Assessing Children in Need and their Families: Practice Guidance', Department of Health, the Stationery Office, 2000, London).
For children the early identification of difficulties and effective intervention is crucial to raising educational standards and creating an inclusive society. Introduction of the new Foundation Stage and Early Learning Goals from September 2000 reinforces the importance of early identification and intervention. Detailed curriculum guidance published by the Qualification Curriculum Authority in May 2000 emphasises the key role practitioners play in early identification of children's learning needs and planning to support those needs. More detail is available on the DfEE website at: www.dfee.gov.uk/sen/news.
The Department of Health has announced that universal neo-natal hearing screening (UNHS) will be introduced and piloted in 20 areas in England. The lessons that are learnt from the pilots will help to prepare for implementation of UNHS and ensure that it can be implemented everywhere, to a consistent, high standard for all babies and more importantly, for those babies/children diagnosed as having a permanent hearing impairment.
There is a need to recognise the effect that dual sensory impairment has on the following key factors to maintaining independence;
autonomy and the ability to make choices and take control of your life,
health and safety,
managing the daily routines of personal and domestic life,
involvement in education, work, family, social and community activities.
Councils should ensure that as soon as an initial assessment identifies
that there may be dual sensory impairment, a specialist assessment is arranged,
to be carried out by a specifically trained person/team equipped to assess
the needs of a deafblind person - including communication,
one-to-one human contact and social interaction, support with mobility,
assistive technology and rehabilitation.
The assessment should take account of the current needs and those that will occur in the foreseeable future. It is easier for a person to learn alternative forms of communication before their deafblindness has deteriorated to the point where they are no longer able to use their preferred method of communication. Councils will want to note the value of early recognition of the deterioration of one or both senses toward deafblindness when looking at the assessment of those with a sensory impairment.
The National Institute of Clinical Excellence (NICE) issued guidance on hearing aid technology in July 2000. This advised NHS Trusts that the full range of analogue hearing aids should be available in all NHS audiology centres. They also advised that the device offered to an individual patient should be based on a careful matching of device capability to need, on patient choice, and should include binaural fitting where indicated.
Councils need to recognise the importance of providing appropriate services to deafblind people. This may mean commissioning services that are specifically designed for deafblind people. Those with dual sensory impairment may not be able to benefit from mainstream services.
Similarly, as those with one sensory impairment become deafblind they may no longer be able to benefit from services aimed primarily at blind people or deaf people who are able to rely on their other sense.
Councils will want to ensure they are able to access specifically trained one-to-one support workers (e.g. communicator-guides, intervenors etc), whether from within their own staff, by the use of consortia arrangements or by contracting with independent providers, for those people they assess as requiring one.
Possible Funding Sources
The legislative basis upon which councils have responsibility to provide services to deafblind people is outlined above. Councils receive funding to support the provision of services for people for whom they have responsibility through their PSS Standard Spending Assessment - which will include an additional 4.7% (£400 million) for social services spending in 2001/02. There are, however, specific funding initiatives, which councils will wish to bear in mind when addressing the needs of deafblind people.
In December 2000 a Promoting Independence (PI) Grant was announced for councils for the year 2001-2. This grant combines the previous Partnership and Prevention Grants and incorporates the extra £100 million for social services announced on 27 November 2000. Deafblind people often receive a package of care from both health and social services - and close partnership working between those agencies is needed to ensure users receive well co-ordinated services. The PI Grant could be a suitable source of funding to 'pump-prime' improved joint planning and service provision to deafblind people. PI Grant guidance will be issued by the Department of Health shortly.
When considering training needs, councils are reminded that funds within the Training Support Programme can be used to supplement the costs of visual impairment, hearing impairment and deafblindness training. Funds from the Quality Protects Grant can also be put towards these training costs in line with the priority
Objective 10: Managing Change.
In recognising the role that equipment plays in enabling disabled people to live independently in the community, the NHS Plan made a commitment to modernise the community equipment service. The aim is for integrated health and social services provision reaching 50% more people by 2004.
To support these targets there will be additional provision in the PSS SSA over the next three years, to go alongside a further £105 million in the NHS. These additional services are intended to benefit people with sensory and dual sensory impairment as well as those with physical disabilities, and are for children and adults of all ages.
Disabled children are now a priority area in the Quality Protects programme to transform children's social services. Over the next 3 years £60 million from the children's services special grant has been earmarked for services for disabled children and their families - £15 million in both 2001/02 and 2002/3 and £30 million in 2003/04.
Expenditure is being targeted on increased provision of family support services, including short-term breaks, better integration of disabled children into mainstream leisure and out of school services, better information for families and the increased availability of key workers and other measures to improve co-ordination.
The three cross-government programmes for children: Sure Start, The Children's Fund and Connexions, will all include disabled children as one of the priority groups to be given support.
Deafblindness poses particular challenges in ensuring that information and services are accessible in ways that conform with the requirements of the Disability Discrimination Act 1995. In the same way that councils ensure that information they produce and issue about services, procedures etc is accessible to those with one sensory impairment, so they should ensure that such information is also available in formats and methods that are accessible to deafblind people. Councils will need to consider not only various sizes of Large Print, as well as Braille, Moon, audio or video (subtitled or signed) versions but also computer disk or use of e-mail (to be accessed by specialist technology), text-phones and Type-Talk. For some deafblind people no method of communication other than tactile communication delivered by another person is available (e.g. hands-on sign, deafblind manual). In these rare circumstances a provision of a suitably skilled communicator to deliver information would be appropriate.
The Department of Health will be monitoring compliance with the above guidance. This will include making use of the In-year Position Statements. In the short term this will mean ensuring that one person in each council has overall responsibility for deafblind services and that a process is in place to ensure that records are being kept of deafblind people in the area.
At present, some information on the number of adults with dual sensory impairment who have been assessed by social services or are in receipt of social services is available from the Referrals, Assessments and Packages of Care (RAP) data collection. In the longer term we would expect information on the physical and sensory disabilities of social services clients to be captured as part of the electronic social care record.
Councils will, through their benchmarking activities, also want to monitor their progress in contacting deafblind people in their area - comparing the number of people with whom they have contact with the number identified by like-councils as well as the national estimates of incidence.
34. Some examples of ways for councils to take the above guidance forward
are given in Annex 2. Councils may require further information in complying
with the guidance. Supporting material, covering such areas as training,
resourcing, models of provision, good practice and related studies/reports
and performance monitoring can be found on our website at:
35. Enquiries from those without access to the internet should be addressed to:
ANNEX 1: DESCRIPTORS FOR CONGENITAL AND ACQUIRED DEAFBLINDNESS
People who are born with hearing and sight impairment may display any of the following characteristics:
no response to sound and/or light tactile defensiveness - avoiding touch (children - especially younger children)
problems with eye contact/social participation at an early age
slowness in developing and generalising skills (children) adopting an unusual posture for undertaking tasks - using residual hearing or sight eccentrically (children) difficulty making sense of the world around them developmental delay personalised methods of communication repetitive behaviour behaviour likely to harm themselves or others withdrawal/isolation use of smell, taste, touch to gain information
People who acquire a hearing and sight impairment later in life may display any combination of the following characteristics:
ANNEX 2: SOME EXAMPLES OF THE WAY FORWARD
The following are a few examples of existing good practice. More information
on models of good practice, local projects and other initiatives can be
found on the website.
Between March 1997 and February 1999, Kent Association for the Blind (KAB) and Kent County Council, Deaf Services Bureau (DSB) worked on a project to identify people in Kent who are deafblind and to learn what support they and their carers required. The project covered the areas administered by Kent County Council and Medway Council.
A deafblind survey package was distributed in order to gather information about the numbers of deafblind people in the area and their levels of visual and hearing loss. People were also asked to give details of services that they considered may be of help to them. Information about hearing loss was also obtained from completed BD8 forms. During the project 1,128 people were identified as being deafblind. The main KAB register was amended so that people who are deafblind (dual sensory loss) can be easily identified.
With funding from East and West Kent health authorities and Kent County Council being agreed in April 1999, preparations were made for the guide communicator support service. KAB recruited a small team of guide communicators that they trained in conjunction with Deafblind UK. On 1st October 1999, KAB launched its guide communicator service.
As part of this work an assessment tool was created to improve practice in this area.
Details available from: Kim Terry, Project Manager, Kent Association for the Blind, Tel 01622 691357; e-mail email@example.com
The RNIB report `Think Dual Sensory in Essex' identified 600 deafblind
people in the county.
A Development Officer for Deafblind People has been employed in Essex since January 1999. This is a 3-year post funded by social services,
Deafblind UK and Sense. During this time the Development Officer aims to identify the needs of and offer support to deafblind people, their families and carers. The intention is to raise awareness of the needs of deafblind people, develop services to meet identified needs within the statutory and voluntary sectors. Essex employs 1.5 full-time equivalent workers with deafblind people. A deafblind register runs alongside the blind and partially sighted and deaf and hearing impaired registers.
Essex has set up a deafblind planning group jointly chaired by a local authority officer and a deafblind person. The group includes members from social services, parents of deafblind children and deafblind people. It has undertaken a survey of deafblind peoples' views about the services they receive in Essex. It has been independently and favourably evaluated as making a real contribution to the lives of deafblind people. Other initiatives include working with Deafblind UK on a volunteer scheme and setting up social clubs for deafblind people.
Further information can be obtained from Faye Harburt: Project Worker,
Essex Social Services, Tel 01206 714727;
London Borough of Greenwich
Greenwich SSD has established a specialist full-time post - Care Manager for Deafblind People which is divided between care management and development work.
Greenwich SSD has set up a separate database within the sensory impairment team to identify people with combined deafness and visual loss. It has also created procedures for both the deaf and visual impairment teams to identify deafblind people living in the borough. Deafblind awareness training is offered to access and day centre staff and care managers.
Greenwich has run a poster campaign in English and Minority Ethnic languages in health centres and libraries to advertise its services for deafblind people. It is establishing links with other agencies and local authorities with a view to developing joint working initiatives. It is currently spot-purchasing communicator guide services.
For further information contact: Tricia Pereira (Monday-Wednesday am)
or Ruth Alley (Wednesday pm to Friday), Joint Deafblind Care Managers,
London Borough of Greenwich, Tel 020 8921 3046; e-mail
firstname.lastname@example.org and/or email@example.com