Starting a guide help scheme for deafblind people.
By TONY POUNDER and DEBBIE JAMES.
This article was published in the New Beacon
by The Royal National Institute for the Blind,
on May 1999 V83 No. 975, and in June 1999 V83 No. 976.
[TONY POUNDER, Unit Manager of Northamptonshire County Council's Sensory Impairment Unit, and DEBBIE JAMES, Service Manager, Deafblind U K describe the development of a volunteer guide help scheme in the county.]
In the February 1999 issue of New Beacon, the R N I B's Corporate Deafblind
Services Co-ordinator John Wadsworth lamented the poorly developed state
of services for deafblind people across the country. We suspect that few
would disagree with him.
[If you wish to read the article by Mr John Wadsworth Please Enter here.]
But in the face of ever increasing pressures on static or even dwindling local authority resources, it may be difficult for most managers and practitioners at a local level to see how new services might be developed to meet the needs of deafblind people.
However, we believe that in Northamptonshire we have demonstrated that there is a practicable, relatively low cost response worth considering: setting up a volunteer based guide help scheme.
This is one of two articles which will describe the development of a guide help scheme for deafblind people in Northamptonshire from its beginnings in November 1996 up to March 1999.
In the next article, the recruitment, training and support of the volunteer
guide-helps will be described. The process of matching
guide-helps with deafblind people, and the systems developed to monitor and evaluate these links, will also be outlined.
This article sets the scheme in its context. First, the background and rationale for its development will be briefly summarised. Secondly, the organisational and financial framework within which it has developed will be described.
Northamptonshire is a fairly typical shire county, with a population of about 600,000. It contains some small and medium-size towns, but many people live in more rural areas where public services, including transport, are frequently poor.
Figures concerning people with a sensory loss living in the county are not terribly reliable, with a substantial gap between the numbers identified via the "headcount" approach of the registers and the numbers suggested from epidemiological data or census returns. For example, there are 3,300 people on the Register of Blind and Partially Sighted People, but it is estimated that the "registrable" population of the county is around 10,000 (Visual Handicap Group, page 53). A considerable effort has been made over the last year to improve the management of the register so that the data it contains are more accurate and can be used for planning purposes. For example, current data shows that about 70 per cent of the 340 or so newly registered people each year are over 75 years old, and that 20 per cent of these people self-report having a significant hearing loss. Such locally acquired data provide useful concrete evidence on which to base discussions.
Epidemiological data on deaf and hard of hearing people suggest that there are about 5,000 people with a severe or profound hearing loss aged over 60 years living in the county (Davis, 1995). Local estimates suggest that there may be 300 to 400 B S L users, spread across the whole age range, although no reliable figures are available.
Based on the Deafblind Services Liaison Group estimate of prevalence rates of 40 per 100,000, the number of deafblind people in Northamptonshire is thought to be around 240 (D O H, 1996). However, Palmer's work (1996) in the neighbouring county of Leicestershire suggested prevalence rates were more than four times higher than the Liaison Group's estimates. Assuming a similar rate here would imply there might be over 1,000 people in the county with a dual sensory loss.
Social Services for people with a sensory impairment living in Northamptonshire are provided through a specialist Sensory Impairment Unit, consisting of rehabilitation officers, social workers with deaf people, technical officers for the hearing impaired and specialist care managers working with people with a visual impairment.
Like most authorities, there were no designated posts for staff specialising in working with people with a dual sensory loss, although there were some people in the Sensory Impairment Unit with considerable interest and relevant skills in this area. Any work that was undertaken with people with a dual sensory loss was typically focused on particular individuals who received ad hoc responses from the various workers in the team. Although they undoubtedly received a very committed and professional service from staff, such efforts probably obscured the need for a specialist service tailored to the needs of deafblind people.
There are also two main voluntary sector providers of services to people with a sensory impairment in the county, the Centre for Deaf People and the Northamptonshire Association for the Blind. Both have run weekly or monthly groups for deafblind people at their respective centres for some years. Deafblind U K has also been active in providing information and support via a lone volunteer visitor. In 1996, however, between these three organisations there were perhaps no more than half a dozen people identified as deafblind, all of whom were in their 70's or 80's, all of whom were women.
Getting to the starting line.
Local agencies were prompted to consider afresh the needs of deafblind people each time major reports (see D O H, 1988 and D O H 1991) came out. However, little progress was made in identifying and securing new resources to back any developments, say, for a guide help scheme. The fact that the numbers of known deafblind people were so small probably meant that their needs simply got lost in the intense clamour and competition for resources.
When the more recent reports Think Dual Sensory and Touch and Go came out, staff at the Sensory Impairment Unit felt a different approach was needed to ensure their findings and recommendations were acted upon this time.
To create some momentum, therefore, an Open Meeting was called which took place in November 1996. Invitations were sent out to many groups and individuals. Local voluntary agencies, Sensory Impairment Unit staff and representatives from R N I D, Sense and Deafblind U K attended. It was apparent that all three national organisations were keen to encourage developments in Northamptonshire and may have been interested in running services themselves if the possibility arose. A small number of people with a dual sensory loss and some carers also attended.
What was most important about the gathering was that psychologically it did create the forward momentum we had hoped for. Holding such an event obviously created expectations amongst deafblind people and their carers, and resulted in pressure on staff to do something positive. It was made clear that no one could see the point of a series of meetings to discuss what might be done whilst deafblind people waited months or years for something to happen. The message was that it was better to devote whatever energy there was to developing something, however imperfect and small it was, rather than dissipate energy in discussions and a headcount of people with a dual sensory loss.
Looking at it from another angle, there was, of course, already some published research on the identification of deafblind people (e.g. Palmer, 1996). Such work had convincingly demonstrated that there were far more deafblind people in the areas researched than had previously been assumed. Unless there was something very unusual about Northamptonshire, it seemed a fair assumption that the same would be true here. We therefore decided against commissioning further similar research to identify just how many deafblind people there were in this county, and decided to devote whatever resources we could afford into service development itself.
Finding a partner.
We therefore decided that we would try to develop a small guide help scheme and see in the process what we could learn from it. Despite having one member of staff who had a special interest in working with deafblind people, we felt it was important to seek a partner for the scheme from amongst the national agencies in the field. We felt that we needed to have the benefit of their experience, know-how and reputation as we planned, publicised and developed the scheme. Subsequent personnel changes proved this approach was correct.
We considered the options carefully, and decided to approach Deafblind U K to become our partner. They were already active in the county with a home visitor scheme, albeit on a very small scale. There were also established links between Deafblind U K and members of the Sensory Impairment Unit, and so negotiations were easy to instigate, move forward and complete.
We knew we would have to advertise through the media to recruit volunteers and the Deafblind U K's profile, its history as a membership based organisation and its commitment and willingness to "think small" and work with very limited resources offered considerable advantages.
From Deafblind U K's perspective, the partnership offered the opportunity to build a service for deafblind people using the existing local resources, reputation and networks of the Sensory Impairment Unit as a sound foundation.
Initially our agreement was that we would ringfence some of the time of two of the Sensory Impairment Unit's staff and a small dedicated budget to set up the scheme. Free support from Deafblind U K in the form of publicity and training materials, and advice and consultancy to the Sensory Impairment Unit's staff was accepted.
The Sensory Impairment Unit's commitment amounted to the equivalent of about £6,000 in salary costs, made up of seven hours per week of a rehabilitation officer's post and four hours of a rehabilitation support officer's post. £4,000 was dedicated to any start-up costs (such as publicity materials, stationery) and for paying the expenses of volunteers.
The details of the development of the guide-help scheme will be described in the next article. However, what was clear from very early on was that a volunteer guide-help scheme was viable in Northamptonshire. Indeed its success far exceeded expectations.
But this success posed its own challenges, since the staff resources needed to maintain the scheme grew as the scheme grew in size.
In early 1997 we therefore decided to put in a bid for Joint Finance. However, the preparation of the bid had to be hurried, and we were not surprised when we were unsuccessful.
During the next year we worked hard at preparing the ground for another Joint Finance bid. This included making presentations to various groups inside and outside the social services department, including one to the members of the County Council's Social Services Committee. We also sought and received the active support of our local voluntary sector partners for our bid.
The documentation was carefully prepared and was made on the basis of a partnership bid between Deafblind U K and the Sensory Impairment Unit. On the basis of the existing resources devoted to the scheme and our expansion plans, we bid for £21,000 per year (rising with inflation in years 2 and 3). This included £6,000 to Deafblind U K as a kind of consultancy fee, designed to cover the costs of volunteer training, management of the scheme, and supervision of a new staff member. This new person was to be in the new post of Guide Help Scheme Co-ordinator, at N J C Scale 4 rates for 21 hours per week. The remaining money was to pay for the expenses of recruiting and supporting more members.
Thankfully we heard in January 1999 that the Joint Finance bid was successful, and so at the time of writing we are in the process of recruiting to the post for an April 1999 start.
Altogether the scheme now has thirty two deafblind people who are linked with one or more of the trained and approved guide helps. Another eighteen deafblind people are waiting for a volunteer, and there are eleven guide helps waiting for a first or additional link to be made. Another twenty people have been identified as deafblind as a result of the publicity from the scheme and are receiving other services from Deafblind U K or the Sensory Impairment Unit--they do not currently want a Guide Help, however. Total expenditure on volunteers expenses, training materials and other incidental expenses during the financial year 1998/99 has been around £3,300.
We hope we have showed that it is possible to build up a small but significant service for deafblind people based on a volunteer guide help scheme. We recognise that there were some local factors which made conditions favourable for such a development, but with determination and a flexible attitude to the use of resources it is a model which might be reproduced elsewhere. The key recommendations we would make to anyone thinking of setting up a similar scheme are as follows:--Aim for small but meaningful service developments to build up confidence, service visibility and momentum; Work in partnership with local agencies and within Social Services to raise the profile of the needs of deafblind people; Forge a partnership based on a common agreed agenda with one of the national voluntary sensory impairment agencies which can offer specialist advice and support on deafblind issues; Be willing to use resources, both financial and staff, flexibly to pilot developments; Prepare the ground for applications for additional sources of funding well in advance.
1. Davis, A (1995): "Hearing in Adults". Whurr, O N S, National Population Projections.
2. Deafblind Services Liaison Group (1988): Breaking Through: Developing Services for Deafblind People.
3. Department of Health (1996): Think Dual Sensory.
4. Palmer, B: Enforced Isolation: A study of the needs of dual sensory disabled people living in Leicestershire. Royal Leicestershire, Rutland Wycliffe Society for the Blind.
5. Social Services Inspectorate (1989): Sign Posts: Leading to Better Social Services for Deafblind People. Department of Health.
6. Social Services Inspectorate (1991): Good Sense Guide. Department of Health.
7. Visual Handicap Group (1997): Closing the Gap: a Discussion Paper.
R N I B.
Deafblind U K's approach to providing services for deafblind people is "for heaven's sake start providing something"! No matter how small the budget, or how little you know about the profile of the deafblind population in your area, much can be achieved from very small beginnings.
We know of authorities who claimed to have "no" deafblind people who suddenly found they had dozens as a result of the activities of a one-day a week worker paid £30 a day, and we know of a guide help scheme which was set up on a £5,000 budget, which included just £50 for the training of guide helps.
So when Northamptonshire approached Deafblind U K with the idea of working in partnership, we approached the suggestion with enthusiasm.
Working in partnership proved invaluable, as Deafblind U K have vast knowledge of the needs of deafblind people and have experienced staff on-hand for advice. Referrals from deafblind people needing volunteers came in thick and fast from various places, including Northamptonshire's Sensory Impairment Unit and their countywide Care Managers.
The aims of the Scheme were outlined from the beginning: meet the needs of deafblind people already known to us; test the viability of a volunteer guide help scheme in Northamptonshire, working in partnership to pool resources and experience; see whether the publicity surrounding the development of the scheme would help identify more people with a dual sensory loss.
All were achieved within a very short period of time.
The next task was to recruit volunteers. Adverts were placed in local newspapers, appeals made on radio and a mailshot was sent to all G P surgeries, church groups and sign language tutors at local colleges. To ensure people knew who they were volunteering for, we created some "working in partnership" headed paper incorporating both logos and names from Northamptonshire Social Services and Deafblind U K. We were asked to start small--six volunteers with six deafblind people.
The reality was another matter--in response to our publicity volunteers were contacting us from all over the county.
To ensure we got things moving quickly. prompt responses were made to requests for further information and application forms. We then followed up references, made police checks and issued I D cards. People seemed very keen to move on to the next step--training. Deafblind U K delivered an intensive one-day course, with deafblind members participating to reinforce communication skills. Staff from the Sensory Impairment Unit of Northamptonshire Social Services also provided input on a number of related matters. All volunteers were given a certificate and volunteer's badge.
The next stage was matching guide helps with deafblind people. This is usually an easy process if you research the deafblind person's likes, dislikes and interests as well as considering their mobility and communication needs. Introductions were made and individual practical follow-up training provided. After two or three weeks an initial review took place--all opinions taken, digested and resolved (if necessary).
This was followed by a three-monthly review with the deafblind person and on-going telephone support with the volunteer. The guide help volunteers are encouraged to have a "get-together" every six weeks, an ideal opportunity to gain support from the organisers and other volunteers over a cup of coffee or a pint! By working together with the Sensory Impairment Unit we ensured that there was always a member of staff on hand to deal with any queries from volunteers quickly.
Deafblind people respect and trust volunteers much more than paid workers as they know they are supporting them out of the goodness of their hearts.
The scheme has the constant back-up of Deafblind U K, and the organisation is able to provide further training to the guide helps to keep them interested and enable them to gain relevant skills--such as using a minicom, learning braille for correspondence purposes, C A C D P qualifications etc.
In one year the partnership of Deafblind U K and Social Services provided thirty-five deafblind people with the service of volunteers. The twenty-three guide helps who visit deafblind people regularly provide monthly reports which can alert at an early stage any further needs of a deafblind person before it reaches crisis point.
Deafblind U K and Social Services value the benefit of the work volunteers provide, but more importantly the deafblind person and their carer/s appreciate the support a volunteer can offer to their lives. In the next few months there will be a total of thirty-five trained volunteer guide helps supporting fifty deafblind people, and we have identified a further twenty sensory impaired people. A relief worker programme has been implemented to enable maximum flexibility for the volunteers.
We have now inducted a paid Guide Help Coordinator (a formern guide help volunteer) in a Joint Finance project to oversee the Guide Help Scheme for 21 hours per week.
The quality of life for the dual sensory impaired people in the Northamptonshire area on the scheme has improved tenfold. They are now able to participate in day-to-day activities that we all take for granted, such as visiting the doctors, making phone calls, shopping trips, food labelling, reading and accessing information, taking exercise, banking and other everyday tasks.
The new initiative is growing, and Deafblind U K's aim that "every deafblind person has a RIGHT to a human support" is becoming a reality!
When you finish reading this report, sit down and think for a couple of minutes about your own resources, then ask yourself these simple questions: Can you or your colleagues identify a small number of deafblind or dual sensory impaired people in your area with limited access to information, communication and mobility?; Have you ever been concerned about the prospect of a deafblind person being left without any support, perhaps "at risk", with no fresh air, no companionship, no quality of life and living "behind the times"?; What happens if home care agencies do not provide the right means of communication to suit the individual, always choosing the wrong brand or item of shopping and never having time to sit and discuss which tasks need to be achieved before their allocated time is up?; How long does a deafblind person spend alone, or with the same carer?; Does the carer have a break?
A part-time Guide-Help co-ordinator working in partnership with Deafblind U K can organise volunteers to help provide deafblind people with a better quality of life and a tailor-made service can be arranged to suit each and every individual--as proved in Northamptonshire!
Please contact Debbie James at Deafblind U K on 01733 358100 to discuss your area. We can start small and work together to meet the needs of deafblind and dual sensory impaired people.
Deafblind U K will be sending out details of their services in Awareness Week, 24 June 1999--please contact me if you do not receive a copy.
REMEMBER: 40 people per 100,000 are deafblind--one person in every 2,500!