Chapter 4 Services For People With A Dual Sensory Loss

99. In this chapter we introduce the national voluntary organisations who work with people with a dual sensory loss. We also examine local authorities' performance in assessing need. We believe individual assessment with the full involvement of the deafblind person, and their carer, is the cornerstone for providing care (notes 26 & 27). We go on to examine local authorities' performance in responding to requests for assistance with communication, information and mobility. Local authorities are under the same obligation to provide services to people with a dual sensory loss as they are to people with a single impairment.

National Voluntary Organisations

100. Deafblind UK (Scottish office) and SENSE are the 2 national organisations working with people who are deafblind in Scotland. Like those they represent, they advocate that dual sensory loss is different from visual impairment, deafness and being hard of hearing. It should not be hidden under the shadow of work with people with a single sensory impairment.

101. Deafblind UK (Scottish office) and SENSE have a reservoir of knowledge and experience unlikely to be attained by the largest local authorities. Smaller authorities (those with a population of less than 125,000) may have as few as 50 deafblind people within their area. They are unlikely to be in a position to develop local expertise to provide specialist services required by deafblind people.

Assessing Need

102. Good assessment practice does exist in some Scottish local authorities. For example:

A deafblind woman in her mid-fifties was receiving community-based treatment for a psychiatric condition. Her only son was her full time carer. Health and specialist social work staff together with Deafblind UK (Scottish office) assessed the needs of both people. Care planning resulted in an excellent range of assistance including communication support and respite care.

103. Authorities differ in their arrangements for the assessment of deafblind people. The numbers of deafblind people are small so they do not fit easily into one team's set of responsibilities and the definition of what constitutes deafblindness also varies. Some authorities only consider those who have been deafblind from birth to fit that category. Anyone with a hearing impairment who then becomes visually impaired would not be thought of as deafblind. If they are already known to the social work department, they are likely to continue contact with those who provided the original service. They may not be referred on unless there is an effective review procedure in place.

104. Where there are separate services for deaf and visually impaired people, as in the larger authorities of Aberdeen, Fife and Glasgow, deafblind people whose first impairment is visual are likely to be registered. They will then be known to either specialist in-house teams or local societies for the blind.

105. Deafblind people whose first impairment is being deaf or hard of hearing may also be known to specialist teams, or agencies. Specialist teams for the deaf are especially sensitive to younger deaf people who may have Usher Syndrome. This is a genetic condition affecting 5% of congenitally deaf people, linking deafness with the degenerative eye condition, retinitis pigmentosa.

106. When specialists workers in Aberdeen, Fife and Glasgow established that there had been a second sensory loss, they linked with the other specialist teams. None of these workers had written procedures for sharing work. Links were established on a case-by-case basis. This can lead to a partial meeting of need, as the following example illustrates:

A registered blind person who was diabetic was experiencing a deterioration in his hearing. Although he was in touch with the local social worker for the Blind for computer tuition he had not been put in touch with the social worker for the Deaf and had bought a sophisticated private hearing aid from his own resources.

107. Our survey suggests robust support is available in Glasgow for people with a learning disability who are deafblind. In contrast, deafblind people without additional disabilities in Glasgow and Fife appeared to receive less well co-ordinated support and relied heavily on family carers. In Aberdeen where much of the work for deafblind people is led by the local Deaf Society, one carer commented:

"There was not much they could do for him, being blind."

108. Local authorities are not alone in pursuing 2 separate assessment routes for deafblind people. Health service staff in our fieldwork sites rarely appeared to collaborate in the interests of this group. One notable exception to this was work to achieve closer links between clinical assessment of sight and hearing loss in Fife.

109. In smaller authorities specialist workers for people with a visual impairment and for people who are deaf or hard of hearing, are sometimes combined in a sensory impairment team. This can lead to greater collaboration on joint assessments for deafblind people but not all small teams have the specific knowledge of deafblindness or communication skills. Only 10 authorities have staff with knowledge of the manual alphabet, and these tend to be larger authorities.

110. Where reviews occurred they were more likely to be on an annual basis. The need for regular reviews, probably as frequent as 6 months, is justified where both sight and hearing may be deteriorating. The lack of written guidance to staff to encourage this to happen is worrying.

111. Good practice in assessment and care planning is the foundation of much of SENSE (Scotland's) work. SENSE (Scotland) provides assessments - sometimes at their own expense - of deafblind people who have additional and, frequently profound, disabilities. Their care planning documentation reflects good practice in this area. (note 28) It is a centre of excellence in this respect. As parents of one student living in a SENSE community house observe:

"In August 1995 Margaret (note 29) came into the care of SENSE. Margaret was then 32 years old and had spent the previous 22 years in a hospital for the mentally handicapped. She is severely restricted because in addition to her mental handicap she has neither sight nor speech. The hospital she was leaving was known to us as a safe harbour and the staff as caring and able, so, however good the intention, the move to a community house to be cared for by unknown people was daunting....Hospital nurses are a well respected professional group with known skills. SENSE's carers were harder to categorise....Our first reaction was surprise at how young they were and at how different their backgrounds seemed to be. Our second reaction was to be very impressed by their commitment to their charges and, in Margaret's particular case, how much effort was put into exploring and trying to extend the bounds of her abilities." (note 30)

112. Both Deafblind UK (Scottish office) and SENSE (Scotland) state that deafblind people are marginalised because of their particular difficulties with communication, information and mobility. The two deafblind people described below illustrate different ways in which they feel or can be marginalised.

Bill (note 31) has both residual hearing and limited vision. He uses either large print or "moving Braille". He lives with his parents and is physically mobile (assisted by a Guide Dog). He worked for several years before being made redundant. He does not expect to be employed again.

He has had little contact with social work staff. He had been assessed for equipment (a Braille clock), but had not been seen by a specialist worker for either the Deaf or the Blind. He purchased other aids to independent living himself. He felt he was holding out a begging bowl. He found this distasteful as he had paid his taxes. When the social worker visited "he talked to my mum and dad, not me."

Alastair (note 32) has been in hospital since he was 7 years old. At the age of 22 he was in a locked ward and heavily medicated because he had showed severe challenging behaviour. He would not wear clothes. He was profoundly deaf, had no vision in one eye and had lost the vision in the other eye because of his self-inflicting eye poking.

Initially Alastair would only tolerate a few seconds of staff contact at a time. He required intensive care which, over a period of 10 years, led him to accept periods of massage, to learn a little signing and to express his choices. His challenging behaviour is now only occasional, and tolerated by staff.

The Services

113. The arrangements for the provision of local authority services to deafblind people tend to mirror assessment arrangements for deaf and blind people, i.e. they are provided by staff teams supporting people with a single sensory loss. Of the 6 areas we visited only Aberdeen had a local organisation, the Rainbow Club, which specialised in supporting deafblind people. They received financial support from Deafblind UK (Scottish office), not Aberdeen City Council.

Communication support

114. The need for communication support for individual deafblind people varies widely. This may include the range provided to people who are deaf or hard of hearing, but adapted for the residual vision available to the deafblind person. For example a profoundly deaf BSL user with tunnel vision may still be able to use BSL within the remaining frame of vision. Someone with restricted vision who has developed deafness as an adult may be able to read large print on a computer screen. The deafblind manual alphabet may be the prime means of communication where neither vision nor hearing is sufficient to use other communication support. Twenty one authorities told us that manual alphabet support was available, 11 authorities purchasing that support from an agency, 10 providing it directly.

115. The introduction of guide/communicators, promoted by Deafblind UK (Scottish office), has been a recent development. The number of trained guide/communicators is small, but growing. Funding for guide/communicators has been made available by a few authorities, but has yet to be established on a sound footing.

116. The guide/communicator provides individualised communication support for the deafblind person. Twenty authorities said they provided guide/communicator support, and 15 authorities reported purchasing the service from Deafblind UK (Scottish office). In its submission to us Deafblind UK (Scottish office) (note 33) stated that less than half of the local authorities in Scotland provided a guide/communicator service "of any kind".

117. According to SASLI there are only 12 trained specialist workers in Scotland (note 34). It is now known exactly how many people who are deafblind require communication services, but it is apparent that this number is inadequate.

Information

118. If deafblind people are to make informed choices about the equipment and services available to them, they need to have information presented in formats that are accessible. For some deafblind people with multiple impairments that information may need to be communicated in a simplified form, most easily transmitted through the manual alphabet.

119. Only 2 of the 15 deafblind people we interviewed, indicated that the information they received was relevant to their needs, and only one person could use the format in which it was presented. This is not surprising as local authorities are poorly informed about the range of formats in which information may be given and received. This was also true of some of their agents.

Mobility

120. Deafblind people may benefit from mobility training and the use of established aids. This may result from assessment and training from specialist teams or agencies working with people with a visual impairment. For some deafblind people the assistance of a personal guide is the main way in which they can sustain their own mobility. Of the 15 deafblind people in our survey over half had assistance from a guide. All but one of these guides was a member of the deafblind person's family.

Summary

• Assessment and review arrangements for deafblind people are consistently led by specialist sensory impairment staff. In larger authorities where there are separate assessment procedures for visually and hearing impaired people, co-ordination of arrangements can be ad hoc. In smaller authorities the requisite skills and knowledge are not normally available. SENSE (Scotland) has questioned the capacity of small authorities to track, identify and prioritise the needs of deafblind people with substantial additional disabilities. We share their concern.

• There is no distinct local authority provision for deafblind people. Services are provided alongside existing services for people with a sensory impairment which may not meet their particular needs. For instance, they may require a distinct service response to assist them with communication, information and mobility. At the time of the inspection these services were not widely available. Where they are provided, this is largely under contract with national voluntary organisations.