Raising the profile of deafblindness.
by John Wadsworth.
This article was published in the New Beacon by The Royal National Institute
for the Blind
in February 1999 v83 No. 972.
[R N I B's Corporate Deafblind Services Co-ordinator, JOHN WADSWORTH, draws attention to the lack of recognition and service priority given to the needs of deafblind people, and outlines how the organisation is trying to improve its own provision.]
A relatively small number of statutory authorities and service organisations nationally have dedicated and organisational arrangements in place for maintaining a range of appropriate services for people with relatively little or no sight and hearing.
The overall picture nationally is extremely patchy, and one of major service under-development.
Until recently, deafblindness has generally had a low service profile, with deafblind people often being marginalised and isolated by the lack of appropriate and accessible services to foster their independence, or to support them in times of chronic or acute need. Over the past few years, in a small number of local areas, some improvements in recognising deafblindness as a separate, distinct disability and prioritising the needs of deafblind people appropriately has occurred.
But real progress at a local level across the country has still been seriously hampered by a number of factors.
The nature and numbers of deafblind people, along with other sensory impaired and disabled people, is slowly changing and increasing. Firstly, deafblind people can generally be divided into four well defined groups with very different needs: those whose hearing and sight loss occur from birth or early childhood; those visually impaired at birth who later lose some or all hearing; those hearing impaired from birth who later lose some or all their vision; those adventitiously sight and hearing impaired.
The R N I B Corporate Deafblind Policy Statement (1997) usefully explains the context of combined sight and hearing loss as follows:
"In the same way as we recognise that there are several ways in which vision can vary (acuity, field defects, near and distance vision etc), so hearing loss has its own varieties with their special effects. The needs of someone with profound hearing loss are different from those with partial loss--some hearing losses vary at different frequencies; some vary in different conditions; some people have tinnitus. The interaction between varying visual losses and varying hearing losses produces a very heterogeneous population, with widely differing needs. Service providers therefore need to recognise these and plan for a variety of different needs.
"The effects of combining hearing loss with visual loss tends to have a multiplying effect. For example, someone with hearing loss can compensate for lack of clarity in hearing conversations through a little lip-reading; it takes only a minimal loss of visual acuity to make this impossible. Similarly, a visually impaired person relies more upon sound cues to help with mobility; only a minor loss of high frequency hearing will make road travel extremely difficult. Service providers therefore need to consider the effects of interaction when considering the needs of a client."
Proportionally, there are now fewer deafblind people who have little or no useful vision and hearing. All deafblind people critically need good access to effective communication, general information and safe efficient mobility in order to lead an independent life of their choice.
It is evident that more people are now also experiencing difficulties with their sight and hearing in later life. The R N I B Survey (1991) found that 22 per cent of visually impaired people under 60 recognised they had difficulty hearing normal speech in a quiet room, and this rose to 34 per cent for those aged between 60 and 74, and 37 per cent for people 75 and over. In this latter group the survey interviewers more directly observed that 45 per cent of people had difficulty hearing the interview. Consequently, an average 35 per cent of all visually impaired people surveyed had additional difficulty hearing.
67 per cent of visually impaired people were also found in the R N I B Survey to have other additional disabilities and health problems. For deafblind people in this position, these added factors further serve to complicate and compound matters for them, reducing their ability to fully utilise any remaining sight and hearing.
The Department of Health, in its Think dual sensory guide, supported the view of the Deafblind Services Liaison Group that using a broad definition there may be at least 40 deafblind people for every 100,000 of the general population. From various pieces of work undertaken nationally, this figure is now thought to be an underestimate. Along with an increase in general life expectancy, and in the numbers of people sensorially impaired and disabled, people experiencing difficulties and problems with both sight and hearing will continue to rise.
Over the past decade, additional social, National Health Service and local government factors have seen large scale changes to the legal, organisational, funding and general approach to statutory and social support services. Most service organisations, whether purchasing or providing services, have had to manage these crucial factors with reduced financial resources, and they have generally taken a narrow and reactive rather than preventative approach to user/customer personal need and service change. This has mostly not been in the best interests of people with a single or particularly dual sight/hearing disability.
The R N I B contribution
R N I B has for many years been committed to maintaining a range of services which directly or indirectly benefit a wide range of deafblind people of all ages. Education, employment training, daily living and mobility aids/products and residential services, to name but a few, have endured the test of time, and remain services valued by customers who use them and professionals working on their behalf.
It is for the reasons outlined above, expressed through the concerns of customers, committee members and staff, that R N I B is responding and seeking to redouble efforts to raise the general service profile and priority given to deafblindness and low vision and hearing.
Consequently, alongside the ongoing provision and promotion of deafblind services, and in line with a continuing capacity and ability to meet broad strategy aims and objectives, R N I B has undertaken to put in place a series of specific measures to further encourage and promote the development of internal and external services:
1. The implementation of a Corporate Deafblind Policy Statement has seen the general development of services for deafblind people now being co-ordinated across R N I B. Deafblind Service Co-ordinators have been nominated in each division to work individually and collectively to push forward the necessary long term improvements required to meet the changing needs of deafblind people.
2. A Corporate Deafblind Services Co-ordinator post was established to work across R N I B servicing policy and planning work, supporting divisional co-ordinators and, where required, facilitating service development and liaison activities.
3. R N I B is reviewing the direct accessibility of its services for a range of deafblind people. Physical and practical access to R N I B buildings and services and effective staff communication with deafblind people--both directly and via Typetalk, minicom services, etc.--are being investigated.
4. Along with work presently being undertaken to increase the recruitment and retention of visually impaired employees is a commitment to ensure that people with impaired sight and hearing are not excluded from this particular process.
5. It is intended that all staff will develop basic deafblind awareness and communication skills, through induction and/or refresher training. As relevant and appropriate to their work tasks, key staff will be further trained in communication and practical skills to provide an effective direct service to deafblind people.
6. Guidance is being planned for staff of all operational and support teams to enable them to identify and take greater account of the service needs of deafblind people, both when in direct contact with them or when indirectly working on their behalf.
7. R N I B public policy and campaign work is aiming, wherever possible, to further include and promote the needs of deafblind people at government and national levels.
8. Ongoing consultation with deafblind people about their general and specific service needs will be gradually introduced. This will enable a greater insight to be gained from the customer's perspective of their service needs from statutory, national and local organisations, arising from any functioning difficulties associated with their impaired sight and hearing. Consultation with carers and supporters of deafblind people will be separately sought.
9. In parallel with customer consultation, R N I B is keen to undertake greater liaison, consultation and co-operation with service organisations, both locally and nationally, concerning the provision and promotion of services for deafblind people. For R N I B this has been particularly beneficial in the recent development and marketing of the "Access" deafblind services and products catalogue and the Guidehelp Service Information Pack.
R N I B has, with others, acknowledged a duty and taken responsibility to further improve its own service provision, and promote development by others of appropriate services benefiting people with a wide variety of sight and hearing disability.
Regrettably, the majority of deafblind people continue to remain either unidentified or marginalised and isolated from specialist or mainstream support services, unable to voice their needs due to a lack of appropriate service focus and priority.
Enabling deafblind people to be socially included and lead an independent life of their choice will require a more dynamic and committed approach by all service organisations nationally.
The need for service recognition and improvement is now more imperative than ever.
Can service organisations hold their heads up if they continue to do
so little to ensure that social change does not exclude, marginalise or
isolate the needs of deafblind people?
R N I B Corporate Deafblind Policy Statement (1997).
Blind and partially sighted adults in Britain--The R N I B Survey (1991). R N I B, London. Sections 12.3.1 & 12.3.2.
Think dual sensory--Good practice guidelines for older people with dual
sensory loss. Department of Health (1997), Chapter 2.