- Email: [email protected]
Aids and services for disabled people-getting the message across
Applied Ergonomics 1981, 12.4, 223-230 II
Consumer Ergonomics
Aids and services for disabled people- getting the message across M.E. Page and J. Spicer Institute for ConsumerErgonomics, LoughboroughUniversity of Technology, Loughborough, Leicestershire Information about aids and services for disabled people has two primary target audiences - the administrators and the disabled recipients - and their needs and problems are different. The administrators experience problems with the diversity and poor quality of information available to them, making it difficult for them to keep up-to-date in all relevant areas without becoming massively overloaded. The disabled themselves suffer from problems related to the whole information dissemination system. They are often referred from one agency to another and are frequently required to extract information rather than having it freely volunteered. Their decreased functional ability, mobility, motivation and sometimes educational level compound this problem so that many disabled people frequently fail to find out about their entitlements. Two areas of information availability causing great problems to both groups are those of aids and financial assistance. Aids supplied to disabled people in their own homes are currently much underused and the take-up rate for financial benefits is frequently quite low. Some solutions to these problems include improvements in the quality of information available to both groups by ensuring more appropriate form and content, communication medium and distribution points. The recognition that most people prefer to ask for information rather than seek it out from written sources is important since the provision of a 'named' person employed by Local Authorities in this capacity would contribute greatly to the improved dissemination of information.
I ntroduction
Problems experienced by the professionals
Information on the qualities of both aids and services used by disabled people can best be obtained by assessment by the potential users. However, there is little point in undertaking an evaluation exercise of any type if the information thus collected does not reach those who can benefit from it. The audience for this information is broadly divided into those who administer and operate the services and the disabled people and their relatives, who are the consumers. When providing information about the results of a study of any sort it is essential to identify the audience in order to know how to make the information available.
There are two aspects to the problems experienced by professionals who wish to be well informed. First, there is an enormous range and diversity of information available to them, and second, the quality of much of it is very poor.
There are many aids and services on which information is already available; some of this information is good and some of it bad. Some of the areas which have caused concern are: aids, adaptations to houses - for example bathrooms or entrances - and the allowance systems. Studies undertaken by the Institute for Consumer Ergonomics and othel organisations will be used to illustrate the various problems associated with information dissemination to both professionals and disabled people. Suggestions for potential solutions and improvements will also be made.
0003-6870/81/04 0223-08 $02.00 Q IPC Business Press
It is very important that the information held by the professionals is accurate and up-to-date since they are the key link to the disabled people they serve.
Quantity of information One major problem is that of being overloaded with information, particularly at the higher levels of the professions. Much information is sent to administrators and never gets passed on to the field workers who actually need it, so that it is difficult for these field workers to keep abreast of current information. Much information can be given in the journals but the time which field workers can spend scanning them is limited and the cost of holding serial literature is high.
Sources of information When considering the problem of obtaining information, a number of studies indicate that this can be quite a
Applied Ergonomics December 1981
223
i
Consumer Ergonomics
-
haphazard operation. A survey in Hampshire (Gann, 1980) showed that the use of information sheets issued by various Government and statutory bodies as posters on noticeboards was an important way of disseminating information amongst staff. However, there was frequently nothing systematic about the display of such information, nor was there any common efficient system of removing old out-of-date notices This aspect of keeping abreast of current changes is important, particularly with such things as benefits, in which the qualifying conditions can change quite frequently. This survey did indicate that many of those interviewed were aware of the problems with obtaining information. Other similar studies carried out by the Institute for Consumer Ergonomics also confirm this general, though ineffectual, concern for the problem (Cooper, 1978 ; Spicer, 1979). In particular, many of the Health Service staff interviewed by Gann expressed some ignorance of the provision and organisation of the Social Services, especially with regard to geographical boundaries and administrative hierarchies, and who to contact at what level. If the professionals themselves have difficulty with this area there is obviously going to be an even greater problem for the people who are disabled. Many professionals rely on colleagues to provide them with information about aids and services, and the Hampshire study indicated that many felt that social workers were the most knowledgeable group. Doctors felt that Health Visitors were also particularly well informed, despite the fact that this is not their prime function. Not surprisingly, those interviewed reported that the organisations they contacted most frequently were those about which they were best informed. This gives rise to the vicious circle in which known sources are over-used and unknown sources are never tapped. This finding would seem to indicate that current publicity is inadequate. Many workers in the Hampshire study (Gann, 1980) felt that it was difficult to get accurate, timely, local information. They felt that local assistance was the most relevant to the individual client's problem. However, national information and addresses were also felt to be important, particularly with the increased mobility of the population.
Aids and equipment One area about which many professionals feel they need information is that of commercial aids and equipment. The information available to them needs to be accurate, easy to use and impartial; frequently it is exactly the opposite. Many contacts between occupational therapists and manufacturers are on a personal level and such contacts are difficult to pass on to colleagues or successors. In addition, studies in Loughborough show that the choice of an aid for a particular client depends largely on what is in stock at the time (Galer, 1977). This may not be a problem if the Supplies Officers are well informed and hold a wide variety of different aids and equipment, but recent contact by one of the authors with Supplies Officers regarding their purchasing policy for easy chairs to be used in residential homes and hospitals indicates that this is frequently not the case.
Financial benefits Financial benefits for disabled people seem to be a major cause for concern amongst the professionals who
224
AppliedErgonomics December
1981
-
tend to feel inadequate and embarrassed by their own ignorance. Many feel that their clients have a right to accurate information about benefits and all the other aids and services available, a n d yet there does not seem to be any systematic way of overcoming the problem.
Quantity of work The final problem faced by the professionals who deal with disabled people is that of overwork. For example, in 1981 there are 11 domiciliary occupational therapists (OT) in Leicestershire Social Services Department to cover a registered population of about 18 000 disabled people. Assistants help to cover the population but they are not qualified to assess people for the provision of some aids or for adaptations to the home. Because of this heavy case load many OTs are not able to visit all the clients who need their help and only rarely is there time to follow up any but the most needy cases to discuss either the client's progress with an aid or his or her further needs. As a consequence of this, many problems remain unseen, unspoken and unsolved. This is not in any way a criticism of the OTs who are extremely conscientious in the face of excessive case loads and deficiencies in administrative arrangements and available back-up facilities.
Problems experienced by disabled people We have already discussed the problems which the professionals face in getting and keeping up-to-date information on their own service provision, and in trying to keep informed about other areas of service provision. We shall now turn to the problems which disabled people have in obtaining accurate and up-to-date information on aids and services which they may require. These problems include who to ask, where to ask, how to find the address, how to get there and how to phrase the question.
Identifying the appropriate agency The number of agencies involved in the provision of aids and services for disabled people may itself be a hindrance to the disabled individual seeking information on a particular topic, since unsuccessful attempts to find a department which one believes may be able to help are likely to discourage the enquirer. The demarcation of responsibility for services may be less than clear, for example, with regard to the provision of personal hygiene aids, responsibility for supply may be taken by the Social Services Department, Area Health Authority or the British Red Cross Society. A study carried out by the Institute for Consumer Ergonomics (Galer, 1977) showed that in 35 areas a substantial number of toilet aids were provided by the Area Health Authority, but in only 18 areas did the Health Authority provide substantial numbers of bath aids. Similar trends can be seen in the role taken by the British Red Cross Society. Many professionals are involved in the care and provision of services for handicapped children and their parents. Although parents may come into contact with health visitors, social workers, speech-, occupational- and physio-therapists, doctors and teachers, they still tend to lack information. In a study of 303 families who had received help from the Family Fund (Family Fund Report, 1976b) the research
Consumer Ergonomics team could not be sure whether parents had been able to distinguish social workers from the other professionals with whom they had contact, but it appeared that 75% of the families had either minimal or no contact with the social services department. Only 11% had contact every four months or more. This lack of contact with social workers bears out the finding from the study that 52% of the parents did not know that the Social Services Department could help with the cost of adaptations to the home. Timing and delays The complex systems for the provision of aids and services mean that referral is often necessary when a request from the public is made. This is likely to cause delays for the disabled person, which may result in an aid or service being of little use by the time it arrives, and this can be particularly serious for handicapped children as their needs change quickly as they grow.
Requesting assistance Another problem in channelling appropriate aids, services or information to disabled people is that the onus is usually on the disabled person to make the request, and so motivation is an important factor. For several reasons this can result in disabled people not being able to obtain the aids, services or information which they require. The Family Fund, amongst others, has shown that parents of disabled children often have very low expectations of help provided by statutory bodies, and this may prevent them from stating needs. An interview study of 60 parents of handicapped children (Lonsdale, 1978) showed that several had found out about the Attendance Allowance through informal and accidental sources of information such as 'the man who came to repair my meter' and 'the lady on the school bus'. Some parents had to enlist the help of their Member of Parliament in order to get the allowance. In addition, some disabled people have missed months and even years of education because of medical treatment and hospitalisation, and for some, this has resulted in a low reading age. A number of people thus have difficulty in using written information (which is often too complex even for the general population, a point which will be discussed later) or in phrasing a question in terms which will get a useful answer. This latter problem is particularly important in the application for financial benefits from the Department of Health and Social Security (DHSS), since information about discretionary benefits is rarely volunteered to the enquirer, particularly if he or she is already receiving some cash benefit or allowance.
Mobility and access The obvious problems facing many disabled people are those of functional limitation, restricted mobility and means of access. Whilst it is a relatively simple exercise for an able-bodied person to write a letter, telephone or visit an office to make an enquiry, any or all of these methods may prove to be impossible or very difficult for a disabled person. How many public offices provide adequate access for users of wheelchairs or crutches, or for blind and
partially sighted people? What buses and trains are really accessible to and useable by, disabled people? All of these problems and difficulties combine to make both obtaining information about aids and services and actually receiving facilities and entitlements a very tortuous and difficult process. It could be made easier if the limitations of the recipients are borne in mind. The provision of home aids for disabled people The problem of getting the right aid to the right person is one which faces all those concerned with the provision of aids. Unfortunately, in spite of much endeavour there is a great deal of mismatch between the aids, the users and their home environments which results in a poor rate of use of many of the aids. Several studies have been undertaken to look at the frequency of use of home aids by disabled people in their homes (Thornely et al, 1977; Galer, 1977). The findings are broadly similar and so the latter study will be used to illustrate the many and varied problems of aid provision. This survey, part of a large scale evaluation of home aids, involved interviews with approximately 500 disabled people who had received personal hygiene aids from the Social Services. The interviews covered the frequency of use of such aids, the problems they solved and also caused, any breakages or other failures, what maintenance and general servicing arrangements had been made, together with information about the recipients. There were people who were using their aids correctly and who managed to remain independent in their own homes and were satisfied with the service they had received. There was nevertheless a fairly large number of people whom the Social Services thought they had helped, but who in fact still had an unresolved problem. Almost all of the sample (97.5%) had some difficulty with bathing and almost two-thirds (63 "4%) had some difficulty in using the toilet. In spite of this, bath aids were only used regularly in 63% of cases and toilet aids in 59% of cases. The commonest reasons for having given up using an aid were that the person could manage without the aid, the user's condition had changed, or the aid did not help. Some technical reasons were also given for not using the aids any more, including the aid not feeling secure, a deterioration in the aid's performance or condition, or the aid just not fitting the bath or the toilet. In addition, a number of problems were discovered with the actual issue and maintenance of the aids. Only just over half (53%) of respondents could remember being told how to use their aid and the majority of aids were issued without either a follow-up visit or a follow-up letter. In over 90% of cases the users considered that the aid either did not need any maintenance or else they were unsure whether it did or not; furthermore some 80% of the aids were not checked regularly. Since the resources in Health and Social Services are so stretched it seems senseless to use so much effort and still fall far short of the ultimate goal of matching the aid, the person and his or her environment.
Information on f'mancial help Financial help to elderly and disabled people is a source of much controversy and disagreement. Generally, the potential recipients seem to be poorly informed about their entitlements, and consequently the take-up rate of many
Applied Ergonomics December 1981
225
Consumer Ergonomics voluntary organisations who seemed to be better informed about this allowance than about others.
benefits is relatively low. Fig. 1 shows some results of a survey in which disabled people in Leicestershire were interviewed in Day Centres, and at home, to discover how they obtained information (Fitzpatrick, 1980). As can be seen, those attending Day Centres were slightly better informed than those who did not.
When asked what use had been made of some specified sources of information and what sources people would consider using first, the results were as shown in Fig. 2. This shows that very little use was made of the information sources per se, for example Citizens Advice Bureaux, Public Libraries, handbooks or directories, or DIAL (local telephone information service for disabled people) and that people prefer to seek information from a personal contact. When asked what sources would be approached for information, differences again arose between those interviewed at home and those who attended Day Centres, the latter citing more potential sources of information. When the home sample were categorised according to their degree of isolation, of those who had a high degree of isolation (that is, lived alone, went out rarely, were visited infrequently, without a telephone) 40% said their only likely source of information would be friends, relatives and neighbours. This survey shows, as others have, that disabled people lack information about financial help for which they may be eligible, and that they tend to rely upon personal contact and communication for their information. The sources upon which they rely - friends, relatives and neighbours, contacts at Day Centres, GPs, social workers and other professional home visitors - are generally unlikely to be much better informed about the complex system of cash benefits. where and how are the nationally available welfare benefits, such as Mobility Allowance, Attendance Allowance, Supplementary Benefit, free prescriptions, milk and vitamins, advertised? The DHSS publish combined leaflets and claim forms describing the complex conditions of eligibility for benefits. These leaflets are intended to be available to the public at all local DHSS offices and at post offices throughout the country. However, a Which? report in 1973 disclosed that only one out of 61 Social Security offices visited could provide all 32 leaflets; and only 42 out of 88 main post offices had all the leaflets they looked for. In addition, 17 of the leaflets looked at were out of date (Consumers Association, 1973).
The sources of information for the majority of the sample were friends, relatives and neighbours, and the media. Those people interviewed at Day Centres had sought information from contacts at the centres. About one third of the total sample found out about Rent and Rate Rebates from posters and leaflets, l~robably because the local authorities had recently distributed leaflets detailing the Rent and Rate Rebate Scheme to all council tenants. It is interesting to note that more of the people interviewed at home knew about Mobility Allowance than Rent and Rate Rebates, although Mobility Allowance is a more specialised type of benefit. It was shown that the media was an important source of information for those at home, as were family doctors, professional home visitors and I00
~ ~Doy
Home sample
centresample
ii!i!iiiii!i !:!:!:!;!:!:!:!:!:i:i:i3
~iiii:il;iil;ililiiii
............ !.!.:!.::..:__-. :i.:81:~:i:i:i:i:i:::i~
........... .............. ..........
::::::::::::::::::::: ! i:i:i!i!i!i!i!:!i!i!i!i!--': :::.:.:.:::::::.~
z~:~ ~:,z~:~:~:~:
/ ~ : ~
!i!i!~i!i!iii!i!i!i!i!i] :::::::::::::::::::::::: ::::::::::::::::::::::::: :i::i:i:i:i:i:i:i:i:i:i! :::::::::::::::::::::::::: ::::::::::::::::::::::::::
i=iii~'iiil
i!!!iiiiiiiiii i !......................
iiii;ii!iiiiiiiiiil) !iiiiiiiiiiii!i!!iiii!i .............
..............i!iiiiii;iiiiiiii!i;iiiiit
iiiiiii!iii!ii}~iiii!}
:::::::::::::::::::::::
Mobility
allowance
Fig. 1
Holiday
Rent and rate rebates
gronts
As well as being inaccessible, the leaflets use complex language, and are not easily understood by the majority of
Percentage of disabled people who were ignorant of certain cash benefits
I00 Home sample Day centre sample
5C
.................
Public library
CAB
Handbook/ directory
Voluntary Professional organisations home visitors
D~,6.L
None
Fig. 2
Some existing information sources and the percentage of disabled people who had used them
226
Applied Ergonomics December 1981
Consumer Ergonomics
If you are getting supplementary benefit, and qualify for invalid care allowance. the allowance will be taken into account when working out your needs. This means that your supplementary benefit will either be cut by the amount ot" the allowance paid to you, or will be replaced entirely by the invalid care allowance. However it may be to your advantage to delay making your claim lot invalid care allo~'ance if you are not receiving the higher long-term rate of supplementary benefit. People who receive Supplementary benefit and who are over pension age or who have been getting supplementary benefit continuously for 2 years (I year after November 1980), and who are not required to register for employment as a condition for retearing their supplementary allowance, receive the higher rate.
H o w and w h e n do I claim ? If you think you meet the conditions for invalid care allowance set out in pages I 3. you should fill in the l~rm aitached to this leaflet and ~end it a.~ s o o n a s p o s s i h h , to the Invalid ('are Allowance Unit at the address shown on page 7. It ),ou tlcla$ makin~ your claim I t yot! ma> lose benefit. Unless you can f s h o t good cause lot the del~ay, you ~t cannot gci the at'lo~vafic-eq'0~-more than 3 months belore the date of the claim. and under no circumstances for more than 12 months before that date
If you receive the lower rate of supplemcntary benefit and receipt of invalid care allowance ~ould completely replace your supplementar 3' benefit, ~,ou should ask your social security office for ~zenerat advice The decision when to cl~im invalid care allowance must rest finally with you. Fig. 3
Extracts from DHSS leaflet NI 212, Invalid Care Allowances
the population. The DHSS has admitted that their leaflets have an 'offputting format', see for example, Fig. 3. This is despite the fact that the Supplementary Benefits Commission "have made considerable efforts to simplify their explanatory leaflets and to write them in a form which people can readily understand" (DHSS, 1978). As in the Loughborough study, (Fitzpatrick, 1980) research by the DHSS involving the trial of a new type of claim form (Peel, 1978; Graham and Brasier, 1979) showed that people generally found out about housing benefits, education benefits and National Health Service benefits from the media, and from informal contacts such as friends, relatives and neighbours, and from other officials, not at the benefit office. It is encouraging that the DHSS are now beginning to realise the shortcomings of the benefit leaflets and claim forms. However, more needs to be done to simplify and improve them, also to disseminate information about benefits more effectively to consumers and professionals providing services.
administrators and providers of such services. Current attempts at this are variable in terms of the quality of information provided, the form of presentation used and the success with which it reaches its target population. Fig. 4 illustrates the stages involved in the production of information and the factors which can increase its effectiveness. In order that potential recipients might act upon information and approach the appropriate agency to request an aid, service or benefit, it is essential to have the following: • good quality information (accurate, adequate, up-to-date) • information of an appropriate form and content for the intended audience (for example, short and simple for the general public) • the appropriate medium to disseminate the information and sufficient coverage (for example, leaflets in sufficient quantity, radio and TV slot at peak time) • sufficient and appropriate distribution points (for example, leaflets in suitable public places for collection, or delivered door to door) Any one of the above factors may have a restricting effect and reduce the effectiveness with which useful information reaches its target audience. For example, information of poor quality is not useful, even if it successfully reaches its audience; information of the best quality is useless if it is presented in a form inappropriate to the user, or if it is not adequately disseminated. It is recommended that information on aids, services and benefits should be developed, presented and disseminated in several forms, such that relevant information is appropriately distributed to intended audiences. Whatever method is used, information should be given in an encouraging, positive manner such that the user is motivated to act upon it. The following section discusses the alternative methods of communication and the relative merits and demerits of each.
Personal communication Solutions
It is essential to provide information about aids, services and cash benefits to potential recipients and to the
1. Word of mouth sources Both the professionals providing the services and the disabled public tend, at present, to acquire
Applied Ergonomics December 1981
227
Consumer Ergonomics To improve the situation, it is recommended that every local authority Social Services area should provide facilities for a named person to collate, produce and disseminate information for the benefit of the disabled public and the professionals providing services within that area. The named person could be an information officer, social worker, a T or community nurse. Every newly disabled person in the area who comes to the attention of Health, Education, Employment or Social Services should be informed of the whereabouts of the named person. The Warnock Committee (Warnock, 1978) made just such a recommendation for parents of handicapped children.
]
F
Important factors
Actions
Development of informahon
Good quality
Pres!ntation of information
Appropriate form and content
II
t
Appropriate and sufficient media
Dissemination of information
[
•
]
Appropriate and sufficient distribut on po nts~
|
i Acquisition and assimilation of -information
!
Action to obtain
I i
_
V
Target ] audience
Appropriate provider/agency
]
3. Follow-up visits Another way of improving the flow of information from professionals to disabled people is to increase the number and frequency of follow-up visits by OTs, health visitors, social workers, etc. This would provide further opportunities for disabled people to ask for information and for the professional visitor to assess the client's needs. These field workers should also be provided with more information about aids, services and benefits which are available in the area but perhaps supplied by another department or agency. A checklist for [tome visits is one aid to ensure that the fieldworker considers all the client's needs. A checklist may be useful for noting whether: • an aid is still being used • the user understands how and when to use the aid • the user can perform all the tasks associated with the use of the aid
Fig. 4
Getting the message across - actions and factors required in the provision of information
information by word of mouth from colleagues, friends, neighbours and relatives. Information obtained in this way is variable in quality, depending on the up-to-date knowledge of the provider; is likely to be lacking in detail and is prone to misinterpretation. It tends also to be obtained on an ad hoc basis, not necessarily in immediate response to a need. However, disabled people and the professionals providing services have expressed preferences for receiving information in this way (Family Fund, 1976a; Fitzpatrick, 1980; Gann, 1980) and encouragement and motivation can be given to prompt them to initiate a formal request for an aid, service or benefit. 2. Disablement Information and Advice Line (DIAL) DIAL services have now been set up in many areas of the country and these voluntary telephone and walk-in advice services are going some way towards meeting the information needs of the disabled community. However, the DIAL services vary greatly in their available resources, organisation, staffing, opening times and information database. Some are run from centres with several staff with facilities for updating and storing information and issuing written back-up to verbal communication, while at the opposite extreme are those run from home by an individual volunteer for perhaps two hours a day. Apart from the variability of the DIAL services, many people still prefer to contact a named individual for information, rather than an unknown organisation.
228
Applied Ergonomics
December 1981
• the aid is considered helpful • the aid is in good working order or whether repairs are needed • changes in the client's condition necessitate reassessment and the provision of new aids or adaptations. Although follow-up visits necessitate more expense, there may be less wastage on aids and equipment which are not used.
Written information Written information on aids, services and benefits can be divided into three categories: • Posters • Leaflets • Reference books, handbooks/directories. Each category has a distinct application because each requires a different form of information presentation and is likely to be produced and distributed on a different basis. 1. Posters These are not widely used at present for informing the public or professionals about aids, services and benefits. Just under a quarter of local authorities use posters as a means of disseminating information to disabled people (Fitzpatrick, 1980). Yet noticeboards are available in health centres, local and central government offices and public libraries. The use of bright, attractive posters could be a relatively cheap way of providing a limited amount of
Consumer Ergonomics information about the existence of a service. Even if these posters are not seen by those disabled people with limited outdoor mobility, they may be seen by their friends, relatives and neighbours. The information content of posters should be kept brief and simple, making maximum use of visual appeal. 2. Leaflets Leaflets are another relatively cheap method of information dissemination. Their success depends on a clear, uncluttered and attractive layout containing succinct information, in simple every-day language. Sufficient quantities must be made available and be effectively distributed. Many leaflets are merely left behind counters at offices and consequently are not distributed to the public. DHSS leaflets about cash benefits should be made more easily available at DHSS local offices and, in particular at post offices. Leaflets may not be an appropriate method of providing professionals with information, because of their loose-leaf nature. Health and Social Services staff tend to be overloaded with paperwork and additional leaflets may merely find their way into the waste paper basket. However, those in the position of providing information to disabled people could usefully give leaflets as written back-up to word of mouth communication.
3. Handbooks/Directories In a survey of methods of information dissemination, over half of the local authorities had produced handbooks or directories of information (Fitzpatrick, 1980). Some of these were intended for the physically handicapped, and some for the general public and professionals in the caring services. The style and content of the literature was variable, but of 14 handbooks subjected to tests of readability all except one required a reading age of 16 years plus, and the majority required a College reading age. It is known that, for the majority of the disabled public, reference books are unsuitable as a source of information on aids, services and cash benefits. Low levels of literacy, difficulties with reading, limited concentration times, the physical problems of handling a book and difficulties with the use of index and referencing techniques can prevent books from being used. Also, the source of information must be accessible and available to the public, and handbooks are unlikely to be produced in sufficiently large quantities, or distributed effectively enough to enable this. However, handbooks and directories can be a valuable permanent source of information to the professionals providing services, saving the professional time, and effort, in seeking information on a subject with which he or she is not familiar. In the design of the reference book consideration must be given to the characteristics of the intended audience, not only in terms of their information needs but also in terms of their methods of working. The following points need to be considered: • The size of the book is important: if it is to be carried it should be small enough to fit into a bag. • The amount of information contained should be detailed enough to answer a query, or to refer a client correctly. • The arrangement of information should be in topic areas
to allow access to specific information from a number of different questions or entry points. • Topics should be sub-divided using clear headings • A comprehensive index and cross-referencing system are essential for quick references since it can prompt the enquirer to elicit further information. • The text should use simple language and should be expressed in the second person, using short, active (not passive), positive sentences. • Instructions should follow the required sequence of events; for example "Before attending hospital get a letter from your doctor" is in the wrong sequence. • Illustrations should be used to break up the text, and to add interest or emphasise a point. • Wide margins, minimum 10 point print and a good contrast with the background should be used. Having produced a comprehensive source of information which is easy to read and use, thought must be given to its distribution and advertising. Enough copies must be produced to serve the needs of the fieldworkers as these are the people who come into contact with the disabled public. The handbooks or directories should be distributed cheaply or preferably free of charge and their existence should be widely advertised in the media, especially local papers. A detailed reference book which is intended for use by professionals should in any case be accessible to members of the public. This can be done by distributing copies to places where disabled people may go to obtain services or where they may seek information. An illustration of the scale of production necessary is provided by a recently produced directory of services and facilities for disabled people in Leicestershire, which was intended primarily to be a reference book for professional workers (Spicer, 1979). Over 2000 copies of the 160 page book were printed and distributed to professionals such as GPs, OTs, social workers, community and hospital nursing staff, day and residential care staff, social security office staff; and to voluntary organisations and local councillors. It was also sent to public libraries, receptions at health centres and doctors' surgeries, community centres, advice centres and post offices with instructions that the book should be available for use by the public. The Media 1. Local newspapers
Over 75% of disabled people interviewed in Leicestershire said they read newspapers and the majority included local newspapers in their reading (Fitzpatrick, 1980). However, only 10 local authorities (out of 90 surveyed) had used the local press as a method of disseminating information to disabled people. Of these 10 authorities, the majority used local newspapers 'from time to time' to describe a new service or facility; only one or two advertised services as a matter of course. Regular features in local newspapers could provide a valuable and cheap source of information for the disabled public and for the professionals administering and providing services. 2. Radio and TV
About half the disabled people interviewed in Leicestershire said they listened to the radio for more than
Applied Ergonomics December 1981
229
Consumer Ergonomics three hours daily; and more than 65% watched television for a similar period every day. Peak listening time was before 10 am; and peak viewing time was early evening ( 6 - 9 pm) when 90% said they usually watched television. The most popular radio station was local radio (Radio Leicester) followed by Radio 2 (Fitzpatrick, 1980). Local radio has been used in several areas as a weekly information source for disabled people, often at the instigation of local organisations. On national radio there are the weekly Radio 4 programmes for the blind (In Touch) and disabled (Does he take sugar?). Fact sheets from these can be obtained on request, and this is an essential back up service as broadcast information merely heard can easily be forgotten or partly missed. More information could successfully be directed through radio and television as this method eliminates the need for the disabled person to ask, or to spend effort in collecting information outside the home. In the case of television the visual demonstration of an aid and an adaptation to a home, car or workplace can give valuable information which is rarely found in other methods of dissemination.
Conclusions The problems experienced by the providers of aids and services come chiefly from the poor quality, range and diversity of information presented to them. Partly due to this and partly to the whole system of obtaining information, many disabled people are currently being poorly served. They are faced with chains of referral from agency to agency and their own personal handicaps make it very difficult for them to obtain all the aids and services to which they are entitled. Improving the quality of information and ensuring that it is disseminated in an appropriate form and place for the specific audience could help to overcome some of these problems. Several different methods of getting the message across are available - some are more appropriate to professional workers providing services and others to the recipients. Written information in the form of well designed leaflets and posters is particularly suited to the needs of disabled people and their relatives but it must be freely available in the places where people go. On the other hand, handbooks and directories are more suited to the professional but access to them by the public must not be overlooked. The media, in the form of local newspapers and radio, are underutilised since it is known that they are a commonly used and popular source of information for the housebound and disabled. Finally, personal advice is extremely popular with both the medical and paramedical professions and disabled people; the employment by local authorities of a named person to whom they can turn for information would be of great benefit to both groups. Whatever method of information provision is chosen, consideration should be given to both the user and recipient of information and appropriate methods and media should be used.
230
AppliedErgonomics December 1981
References Consumers Association 1973 Which? July. Finding welfare benefit leaflets. Cooper, S. 1978 'Aids and equipment for disabled people: feasibility study into the setting up of a resource group'. Institute for Consumer Ergonomics.
Department of Health and Social Security 1978 'Social Assistance: a review of the Supplementary Benefits Scheme in Great Britain'. DHSS.
Family Fund Research Project 1976a 'The Handicapped Child and the Family'. University of York, Department of Social Administration and Social Work, FF49/2.76.
Family Fund Research Project 1976b 'Some practical consequences of caring for handicapped children at home'. University of York, Department of Social Administration and Social Work, FF57/4.76. Fitzpatrick, J.G. 1980 'The needs of physically disabled people for information about facilities and benefits'. Institute for Consumer Ergonomics.
Galer, M.D. 1977 'An evaluation of home aids and equipment for physically disabled persons'. Reports Nos 5 and 6. Institute for Consumer Ergonomics.
Gann, R.E. 1980 Voluntary Organisations Information Research Project: Help for Health Report Nos :2 and 3. Hampshire AHA(T), and British Library (R & D).
Graham, S., and Brasier, F. 1979 'The Multi-Purpose Claim Form Trial in Brighton'. DHSS, Social Research Branch. Lonsdale, G. 1978 Child: care, health and development, 4, 99-120. Family Life with a Handicapped Chitd: the parents speak.
Peel, L. 1978 'The Multi-Purpose Claim Form Trial in Salop'. DHSS, Social Research Branch.
Spicer, J. 1979 'AID: Advice and Information for Disabled People in Leicestershire'. Institute for Consumer Ergonomics and Leicestershire Standing Conference of Voluntary Organisations for Disabled. Thornely, G., Chamberlain, M.A., and Wright, V. 1977 Occupational Therapy, 40.10, 243-246. Evaluation of aids and equipment for the bath and toilet.
Warnock, H.M. 1978 'Special Educational Needs: Report of the Committee of Enquiry into the Education of Handicapped Children and Young People'. HMSO, London.
Consumer Ergonomics
Aids and services for disabled people- getting the message across M.E. Page and J. Spicer Institute for ConsumerErgonomics, LoughboroughUniversity of Technology, Loughborough, Leicestershire Information about aids and services for disabled people has two primary target audiences - the administrators and the disabled recipients - and their needs and problems are different. The administrators experience problems with the diversity and poor quality of information available to them, making it difficult for them to keep up-to-date in all relevant areas without becoming massively overloaded. The disabled themselves suffer from problems related to the whole information dissemination system. They are often referred from one agency to another and are frequently required to extract information rather than having it freely volunteered. Their decreased functional ability, mobility, motivation and sometimes educational level compound this problem so that many disabled people frequently fail to find out about their entitlements. Two areas of information availability causing great problems to both groups are those of aids and financial assistance. Aids supplied to disabled people in their own homes are currently much underused and the take-up rate for financial benefits is frequently quite low. Some solutions to these problems include improvements in the quality of information available to both groups by ensuring more appropriate form and content, communication medium and distribution points. The recognition that most people prefer to ask for information rather than seek it out from written sources is important since the provision of a 'named' person employed by Local Authorities in this capacity would contribute greatly to the improved dissemination of information.
I ntroduction
Problems experienced by the professionals
Information on the qualities of both aids and services used by disabled people can best be obtained by assessment by the potential users. However, there is little point in undertaking an evaluation exercise of any type if the information thus collected does not reach those who can benefit from it. The audience for this information is broadly divided into those who administer and operate the services and the disabled people and their relatives, who are the consumers. When providing information about the results of a study of any sort it is essential to identify the audience in order to know how to make the information available.
There are two aspects to the problems experienced by professionals who wish to be well informed. First, there is an enormous range and diversity of information available to them, and second, the quality of much of it is very poor.
There are many aids and services on which information is already available; some of this information is good and some of it bad. Some of the areas which have caused concern are: aids, adaptations to houses - for example bathrooms or entrances - and the allowance systems. Studies undertaken by the Institute for Consumer Ergonomics and othel organisations will be used to illustrate the various problems associated with information dissemination to both professionals and disabled people. Suggestions for potential solutions and improvements will also be made.
0003-6870/81/04 0223-08 $02.00 Q IPC Business Press
It is very important that the information held by the professionals is accurate and up-to-date since they are the key link to the disabled people they serve.
Quantity of information One major problem is that of being overloaded with information, particularly at the higher levels of the professions. Much information is sent to administrators and never gets passed on to the field workers who actually need it, so that it is difficult for these field workers to keep abreast of current information. Much information can be given in the journals but the time which field workers can spend scanning them is limited and the cost of holding serial literature is high.
Sources of information When considering the problem of obtaining information, a number of studies indicate that this can be quite a
Applied Ergonomics December 1981
223
i
Consumer Ergonomics
-
haphazard operation. A survey in Hampshire (Gann, 1980) showed that the use of information sheets issued by various Government and statutory bodies as posters on noticeboards was an important way of disseminating information amongst staff. However, there was frequently nothing systematic about the display of such information, nor was there any common efficient system of removing old out-of-date notices This aspect of keeping abreast of current changes is important, particularly with such things as benefits, in which the qualifying conditions can change quite frequently. This survey did indicate that many of those interviewed were aware of the problems with obtaining information. Other similar studies carried out by the Institute for Consumer Ergonomics also confirm this general, though ineffectual, concern for the problem (Cooper, 1978 ; Spicer, 1979). In particular, many of the Health Service staff interviewed by Gann expressed some ignorance of the provision and organisation of the Social Services, especially with regard to geographical boundaries and administrative hierarchies, and who to contact at what level. If the professionals themselves have difficulty with this area there is obviously going to be an even greater problem for the people who are disabled. Many professionals rely on colleagues to provide them with information about aids and services, and the Hampshire study indicated that many felt that social workers were the most knowledgeable group. Doctors felt that Health Visitors were also particularly well informed, despite the fact that this is not their prime function. Not surprisingly, those interviewed reported that the organisations they contacted most frequently were those about which they were best informed. This gives rise to the vicious circle in which known sources are over-used and unknown sources are never tapped. This finding would seem to indicate that current publicity is inadequate. Many workers in the Hampshire study (Gann, 1980) felt that it was difficult to get accurate, timely, local information. They felt that local assistance was the most relevant to the individual client's problem. However, national information and addresses were also felt to be important, particularly with the increased mobility of the population.
Aids and equipment One area about which many professionals feel they need information is that of commercial aids and equipment. The information available to them needs to be accurate, easy to use and impartial; frequently it is exactly the opposite. Many contacts between occupational therapists and manufacturers are on a personal level and such contacts are difficult to pass on to colleagues or successors. In addition, studies in Loughborough show that the choice of an aid for a particular client depends largely on what is in stock at the time (Galer, 1977). This may not be a problem if the Supplies Officers are well informed and hold a wide variety of different aids and equipment, but recent contact by one of the authors with Supplies Officers regarding their purchasing policy for easy chairs to be used in residential homes and hospitals indicates that this is frequently not the case.
Financial benefits Financial benefits for disabled people seem to be a major cause for concern amongst the professionals who
224
AppliedErgonomics December
1981
-
tend to feel inadequate and embarrassed by their own ignorance. Many feel that their clients have a right to accurate information about benefits and all the other aids and services available, a n d yet there does not seem to be any systematic way of overcoming the problem.
Quantity of work The final problem faced by the professionals who deal with disabled people is that of overwork. For example, in 1981 there are 11 domiciliary occupational therapists (OT) in Leicestershire Social Services Department to cover a registered population of about 18 000 disabled people. Assistants help to cover the population but they are not qualified to assess people for the provision of some aids or for adaptations to the home. Because of this heavy case load many OTs are not able to visit all the clients who need their help and only rarely is there time to follow up any but the most needy cases to discuss either the client's progress with an aid or his or her further needs. As a consequence of this, many problems remain unseen, unspoken and unsolved. This is not in any way a criticism of the OTs who are extremely conscientious in the face of excessive case loads and deficiencies in administrative arrangements and available back-up facilities.
Problems experienced by disabled people We have already discussed the problems which the professionals face in getting and keeping up-to-date information on their own service provision, and in trying to keep informed about other areas of service provision. We shall now turn to the problems which disabled people have in obtaining accurate and up-to-date information on aids and services which they may require. These problems include who to ask, where to ask, how to find the address, how to get there and how to phrase the question.
Identifying the appropriate agency The number of agencies involved in the provision of aids and services for disabled people may itself be a hindrance to the disabled individual seeking information on a particular topic, since unsuccessful attempts to find a department which one believes may be able to help are likely to discourage the enquirer. The demarcation of responsibility for services may be less than clear, for example, with regard to the provision of personal hygiene aids, responsibility for supply may be taken by the Social Services Department, Area Health Authority or the British Red Cross Society. A study carried out by the Institute for Consumer Ergonomics (Galer, 1977) showed that in 35 areas a substantial number of toilet aids were provided by the Area Health Authority, but in only 18 areas did the Health Authority provide substantial numbers of bath aids. Similar trends can be seen in the role taken by the British Red Cross Society. Many professionals are involved in the care and provision of services for handicapped children and their parents. Although parents may come into contact with health visitors, social workers, speech-, occupational- and physio-therapists, doctors and teachers, they still tend to lack information. In a study of 303 families who had received help from the Family Fund (Family Fund Report, 1976b) the research
Consumer Ergonomics team could not be sure whether parents had been able to distinguish social workers from the other professionals with whom they had contact, but it appeared that 75% of the families had either minimal or no contact with the social services department. Only 11% had contact every four months or more. This lack of contact with social workers bears out the finding from the study that 52% of the parents did not know that the Social Services Department could help with the cost of adaptations to the home. Timing and delays The complex systems for the provision of aids and services mean that referral is often necessary when a request from the public is made. This is likely to cause delays for the disabled person, which may result in an aid or service being of little use by the time it arrives, and this can be particularly serious for handicapped children as their needs change quickly as they grow.
Requesting assistance Another problem in channelling appropriate aids, services or information to disabled people is that the onus is usually on the disabled person to make the request, and so motivation is an important factor. For several reasons this can result in disabled people not being able to obtain the aids, services or information which they require. The Family Fund, amongst others, has shown that parents of disabled children often have very low expectations of help provided by statutory bodies, and this may prevent them from stating needs. An interview study of 60 parents of handicapped children (Lonsdale, 1978) showed that several had found out about the Attendance Allowance through informal and accidental sources of information such as 'the man who came to repair my meter' and 'the lady on the school bus'. Some parents had to enlist the help of their Member of Parliament in order to get the allowance. In addition, some disabled people have missed months and even years of education because of medical treatment and hospitalisation, and for some, this has resulted in a low reading age. A number of people thus have difficulty in using written information (which is often too complex even for the general population, a point which will be discussed later) or in phrasing a question in terms which will get a useful answer. This latter problem is particularly important in the application for financial benefits from the Department of Health and Social Security (DHSS), since information about discretionary benefits is rarely volunteered to the enquirer, particularly if he or she is already receiving some cash benefit or allowance.
Mobility and access The obvious problems facing many disabled people are those of functional limitation, restricted mobility and means of access. Whilst it is a relatively simple exercise for an able-bodied person to write a letter, telephone or visit an office to make an enquiry, any or all of these methods may prove to be impossible or very difficult for a disabled person. How many public offices provide adequate access for users of wheelchairs or crutches, or for blind and
partially sighted people? What buses and trains are really accessible to and useable by, disabled people? All of these problems and difficulties combine to make both obtaining information about aids and services and actually receiving facilities and entitlements a very tortuous and difficult process. It could be made easier if the limitations of the recipients are borne in mind. The provision of home aids for disabled people The problem of getting the right aid to the right person is one which faces all those concerned with the provision of aids. Unfortunately, in spite of much endeavour there is a great deal of mismatch between the aids, the users and their home environments which results in a poor rate of use of many of the aids. Several studies have been undertaken to look at the frequency of use of home aids by disabled people in their homes (Thornely et al, 1977; Galer, 1977). The findings are broadly similar and so the latter study will be used to illustrate the many and varied problems of aid provision. This survey, part of a large scale evaluation of home aids, involved interviews with approximately 500 disabled people who had received personal hygiene aids from the Social Services. The interviews covered the frequency of use of such aids, the problems they solved and also caused, any breakages or other failures, what maintenance and general servicing arrangements had been made, together with information about the recipients. There were people who were using their aids correctly and who managed to remain independent in their own homes and were satisfied with the service they had received. There was nevertheless a fairly large number of people whom the Social Services thought they had helped, but who in fact still had an unresolved problem. Almost all of the sample (97.5%) had some difficulty with bathing and almost two-thirds (63 "4%) had some difficulty in using the toilet. In spite of this, bath aids were only used regularly in 63% of cases and toilet aids in 59% of cases. The commonest reasons for having given up using an aid were that the person could manage without the aid, the user's condition had changed, or the aid did not help. Some technical reasons were also given for not using the aids any more, including the aid not feeling secure, a deterioration in the aid's performance or condition, or the aid just not fitting the bath or the toilet. In addition, a number of problems were discovered with the actual issue and maintenance of the aids. Only just over half (53%) of respondents could remember being told how to use their aid and the majority of aids were issued without either a follow-up visit or a follow-up letter. In over 90% of cases the users considered that the aid either did not need any maintenance or else they were unsure whether it did or not; furthermore some 80% of the aids were not checked regularly. Since the resources in Health and Social Services are so stretched it seems senseless to use so much effort and still fall far short of the ultimate goal of matching the aid, the person and his or her environment.
Information on f'mancial help Financial help to elderly and disabled people is a source of much controversy and disagreement. Generally, the potential recipients seem to be poorly informed about their entitlements, and consequently the take-up rate of many
Applied Ergonomics December 1981
225
Consumer Ergonomics voluntary organisations who seemed to be better informed about this allowance than about others.
benefits is relatively low. Fig. 1 shows some results of a survey in which disabled people in Leicestershire were interviewed in Day Centres, and at home, to discover how they obtained information (Fitzpatrick, 1980). As can be seen, those attending Day Centres were slightly better informed than those who did not.
When asked what use had been made of some specified sources of information and what sources people would consider using first, the results were as shown in Fig. 2. This shows that very little use was made of the information sources per se, for example Citizens Advice Bureaux, Public Libraries, handbooks or directories, or DIAL (local telephone information service for disabled people) and that people prefer to seek information from a personal contact. When asked what sources would be approached for information, differences again arose between those interviewed at home and those who attended Day Centres, the latter citing more potential sources of information. When the home sample were categorised according to their degree of isolation, of those who had a high degree of isolation (that is, lived alone, went out rarely, were visited infrequently, without a telephone) 40% said their only likely source of information would be friends, relatives and neighbours. This survey shows, as others have, that disabled people lack information about financial help for which they may be eligible, and that they tend to rely upon personal contact and communication for their information. The sources upon which they rely - friends, relatives and neighbours, contacts at Day Centres, GPs, social workers and other professional home visitors - are generally unlikely to be much better informed about the complex system of cash benefits. where and how are the nationally available welfare benefits, such as Mobility Allowance, Attendance Allowance, Supplementary Benefit, free prescriptions, milk and vitamins, advertised? The DHSS publish combined leaflets and claim forms describing the complex conditions of eligibility for benefits. These leaflets are intended to be available to the public at all local DHSS offices and at post offices throughout the country. However, a Which? report in 1973 disclosed that only one out of 61 Social Security offices visited could provide all 32 leaflets; and only 42 out of 88 main post offices had all the leaflets they looked for. In addition, 17 of the leaflets looked at were out of date (Consumers Association, 1973).
The sources of information for the majority of the sample were friends, relatives and neighbours, and the media. Those people interviewed at Day Centres had sought information from contacts at the centres. About one third of the total sample found out about Rent and Rate Rebates from posters and leaflets, l~robably because the local authorities had recently distributed leaflets detailing the Rent and Rate Rebate Scheme to all council tenants. It is interesting to note that more of the people interviewed at home knew about Mobility Allowance than Rent and Rate Rebates, although Mobility Allowance is a more specialised type of benefit. It was shown that the media was an important source of information for those at home, as were family doctors, professional home visitors and I00
~ ~Doy
Home sample
centresample
ii!i!iiiii!i !:!:!:!;!:!:!:!:!:i:i:i3
~iiii:il;iil;ililiiii
............ !.!.:!.::..:__-. :i.:81:~:i:i:i:i:i:::i~
........... .............. ..........
::::::::::::::::::::: ! i:i:i!i!i!i!i!:!i!i!i!i!--': :::.:.:.:::::::.~
z~:~ ~:,z~:~:~:~:
/ ~ : ~
!i!i!~i!i!iii!i!i!i!i!i] :::::::::::::::::::::::: ::::::::::::::::::::::::: :i::i:i:i:i:i:i:i:i:i:i! :::::::::::::::::::::::::: ::::::::::::::::::::::::::
i=iii~'iiil
i!!!iiiiiiiiii i !......................
iiii;ii!iiiiiiiiiil) !iiiiiiiiiiii!i!!iiii!i .............
..............i!iiiiii;iiiiiiii!i;iiiiit
iiiiiii!iii!ii}~iiii!}
:::::::::::::::::::::::
Mobility
allowance
Fig. 1
Holiday
Rent and rate rebates
gronts
As well as being inaccessible, the leaflets use complex language, and are not easily understood by the majority of
Percentage of disabled people who were ignorant of certain cash benefits
I00 Home sample Day centre sample
5C
.................
Public library
CAB
Handbook/ directory
Voluntary Professional organisations home visitors
D~,6.L
None
Fig. 2
Some existing information sources and the percentage of disabled people who had used them
226
Applied Ergonomics December 1981
Consumer Ergonomics
If you are getting supplementary benefit, and qualify for invalid care allowance. the allowance will be taken into account when working out your needs. This means that your supplementary benefit will either be cut by the amount ot" the allowance paid to you, or will be replaced entirely by the invalid care allowance. However it may be to your advantage to delay making your claim lot invalid care allo~'ance if you are not receiving the higher long-term rate of supplementary benefit. People who receive Supplementary benefit and who are over pension age or who have been getting supplementary benefit continuously for 2 years (I year after November 1980), and who are not required to register for employment as a condition for retearing their supplementary allowance, receive the higher rate.
H o w and w h e n do I claim ? If you think you meet the conditions for invalid care allowance set out in pages I 3. you should fill in the l~rm aitached to this leaflet and ~end it a.~ s o o n a s p o s s i h h , to the Invalid ('are Allowance Unit at the address shown on page 7. It ),ou tlcla$ makin~ your claim I t yot! ma> lose benefit. Unless you can f s h o t good cause lot the del~ay, you ~t cannot gci the at'lo~vafic-eq'0~-more than 3 months belore the date of the claim. and under no circumstances for more than 12 months before that date
If you receive the lower rate of supplemcntary benefit and receipt of invalid care allowance ~ould completely replace your supplementar 3' benefit, ~,ou should ask your social security office for ~zenerat advice The decision when to cl~im invalid care allowance must rest finally with you. Fig. 3
Extracts from DHSS leaflet NI 212, Invalid Care Allowances
the population. The DHSS has admitted that their leaflets have an 'offputting format', see for example, Fig. 3. This is despite the fact that the Supplementary Benefits Commission "have made considerable efforts to simplify their explanatory leaflets and to write them in a form which people can readily understand" (DHSS, 1978). As in the Loughborough study, (Fitzpatrick, 1980) research by the DHSS involving the trial of a new type of claim form (Peel, 1978; Graham and Brasier, 1979) showed that people generally found out about housing benefits, education benefits and National Health Service benefits from the media, and from informal contacts such as friends, relatives and neighbours, and from other officials, not at the benefit office. It is encouraging that the DHSS are now beginning to realise the shortcomings of the benefit leaflets and claim forms. However, more needs to be done to simplify and improve them, also to disseminate information about benefits more effectively to consumers and professionals providing services.
administrators and providers of such services. Current attempts at this are variable in terms of the quality of information provided, the form of presentation used and the success with which it reaches its target population. Fig. 4 illustrates the stages involved in the production of information and the factors which can increase its effectiveness. In order that potential recipients might act upon information and approach the appropriate agency to request an aid, service or benefit, it is essential to have the following: • good quality information (accurate, adequate, up-to-date) • information of an appropriate form and content for the intended audience (for example, short and simple for the general public) • the appropriate medium to disseminate the information and sufficient coverage (for example, leaflets in sufficient quantity, radio and TV slot at peak time) • sufficient and appropriate distribution points (for example, leaflets in suitable public places for collection, or delivered door to door) Any one of the above factors may have a restricting effect and reduce the effectiveness with which useful information reaches its target audience. For example, information of poor quality is not useful, even if it successfully reaches its audience; information of the best quality is useless if it is presented in a form inappropriate to the user, or if it is not adequately disseminated. It is recommended that information on aids, services and benefits should be developed, presented and disseminated in several forms, such that relevant information is appropriately distributed to intended audiences. Whatever method is used, information should be given in an encouraging, positive manner such that the user is motivated to act upon it. The following section discusses the alternative methods of communication and the relative merits and demerits of each.
Personal communication Solutions
It is essential to provide information about aids, services and cash benefits to potential recipients and to the
1. Word of mouth sources Both the professionals providing the services and the disabled public tend, at present, to acquire
Applied Ergonomics December 1981
227
Consumer Ergonomics To improve the situation, it is recommended that every local authority Social Services area should provide facilities for a named person to collate, produce and disseminate information for the benefit of the disabled public and the professionals providing services within that area. The named person could be an information officer, social worker, a T or community nurse. Every newly disabled person in the area who comes to the attention of Health, Education, Employment or Social Services should be informed of the whereabouts of the named person. The Warnock Committee (Warnock, 1978) made just such a recommendation for parents of handicapped children.
]
F
Important factors
Actions
Development of informahon
Good quality
Pres!ntation of information
Appropriate form and content
II
t
Appropriate and sufficient media
Dissemination of information
[
•
]
Appropriate and sufficient distribut on po nts~
|
i Acquisition and assimilation of -information
!
Action to obtain
I i
_
V
Target ] audience
Appropriate provider/agency
]
3. Follow-up visits Another way of improving the flow of information from professionals to disabled people is to increase the number and frequency of follow-up visits by OTs, health visitors, social workers, etc. This would provide further opportunities for disabled people to ask for information and for the professional visitor to assess the client's needs. These field workers should also be provided with more information about aids, services and benefits which are available in the area but perhaps supplied by another department or agency. A checklist for [tome visits is one aid to ensure that the fieldworker considers all the client's needs. A checklist may be useful for noting whether: • an aid is still being used • the user understands how and when to use the aid • the user can perform all the tasks associated with the use of the aid
Fig. 4
Getting the message across - actions and factors required in the provision of information
information by word of mouth from colleagues, friends, neighbours and relatives. Information obtained in this way is variable in quality, depending on the up-to-date knowledge of the provider; is likely to be lacking in detail and is prone to misinterpretation. It tends also to be obtained on an ad hoc basis, not necessarily in immediate response to a need. However, disabled people and the professionals providing services have expressed preferences for receiving information in this way (Family Fund, 1976a; Fitzpatrick, 1980; Gann, 1980) and encouragement and motivation can be given to prompt them to initiate a formal request for an aid, service or benefit. 2. Disablement Information and Advice Line (DIAL) DIAL services have now been set up in many areas of the country and these voluntary telephone and walk-in advice services are going some way towards meeting the information needs of the disabled community. However, the DIAL services vary greatly in their available resources, organisation, staffing, opening times and information database. Some are run from centres with several staff with facilities for updating and storing information and issuing written back-up to verbal communication, while at the opposite extreme are those run from home by an individual volunteer for perhaps two hours a day. Apart from the variability of the DIAL services, many people still prefer to contact a named individual for information, rather than an unknown organisation.
228
Applied Ergonomics
December 1981
• the aid is considered helpful • the aid is in good working order or whether repairs are needed • changes in the client's condition necessitate reassessment and the provision of new aids or adaptations. Although follow-up visits necessitate more expense, there may be less wastage on aids and equipment which are not used.
Written information Written information on aids, services and benefits can be divided into three categories: • Posters • Leaflets • Reference books, handbooks/directories. Each category has a distinct application because each requires a different form of information presentation and is likely to be produced and distributed on a different basis. 1. Posters These are not widely used at present for informing the public or professionals about aids, services and benefits. Just under a quarter of local authorities use posters as a means of disseminating information to disabled people (Fitzpatrick, 1980). Yet noticeboards are available in health centres, local and central government offices and public libraries. The use of bright, attractive posters could be a relatively cheap way of providing a limited amount of
Consumer Ergonomics information about the existence of a service. Even if these posters are not seen by those disabled people with limited outdoor mobility, they may be seen by their friends, relatives and neighbours. The information content of posters should be kept brief and simple, making maximum use of visual appeal. 2. Leaflets Leaflets are another relatively cheap method of information dissemination. Their success depends on a clear, uncluttered and attractive layout containing succinct information, in simple every-day language. Sufficient quantities must be made available and be effectively distributed. Many leaflets are merely left behind counters at offices and consequently are not distributed to the public. DHSS leaflets about cash benefits should be made more easily available at DHSS local offices and, in particular at post offices. Leaflets may not be an appropriate method of providing professionals with information, because of their loose-leaf nature. Health and Social Services staff tend to be overloaded with paperwork and additional leaflets may merely find their way into the waste paper basket. However, those in the position of providing information to disabled people could usefully give leaflets as written back-up to word of mouth communication.
3. Handbooks/Directories In a survey of methods of information dissemination, over half of the local authorities had produced handbooks or directories of information (Fitzpatrick, 1980). Some of these were intended for the physically handicapped, and some for the general public and professionals in the caring services. The style and content of the literature was variable, but of 14 handbooks subjected to tests of readability all except one required a reading age of 16 years plus, and the majority required a College reading age. It is known that, for the majority of the disabled public, reference books are unsuitable as a source of information on aids, services and cash benefits. Low levels of literacy, difficulties with reading, limited concentration times, the physical problems of handling a book and difficulties with the use of index and referencing techniques can prevent books from being used. Also, the source of information must be accessible and available to the public, and handbooks are unlikely to be produced in sufficiently large quantities, or distributed effectively enough to enable this. However, handbooks and directories can be a valuable permanent source of information to the professionals providing services, saving the professional time, and effort, in seeking information on a subject with which he or she is not familiar. In the design of the reference book consideration must be given to the characteristics of the intended audience, not only in terms of their information needs but also in terms of their methods of working. The following points need to be considered: • The size of the book is important: if it is to be carried it should be small enough to fit into a bag. • The amount of information contained should be detailed enough to answer a query, or to refer a client correctly. • The arrangement of information should be in topic areas
to allow access to specific information from a number of different questions or entry points. • Topics should be sub-divided using clear headings • A comprehensive index and cross-referencing system are essential for quick references since it can prompt the enquirer to elicit further information. • The text should use simple language and should be expressed in the second person, using short, active (not passive), positive sentences. • Instructions should follow the required sequence of events; for example "Before attending hospital get a letter from your doctor" is in the wrong sequence. • Illustrations should be used to break up the text, and to add interest or emphasise a point. • Wide margins, minimum 10 point print and a good contrast with the background should be used. Having produced a comprehensive source of information which is easy to read and use, thought must be given to its distribution and advertising. Enough copies must be produced to serve the needs of the fieldworkers as these are the people who come into contact with the disabled public. The handbooks or directories should be distributed cheaply or preferably free of charge and their existence should be widely advertised in the media, especially local papers. A detailed reference book which is intended for use by professionals should in any case be accessible to members of the public. This can be done by distributing copies to places where disabled people may go to obtain services or where they may seek information. An illustration of the scale of production necessary is provided by a recently produced directory of services and facilities for disabled people in Leicestershire, which was intended primarily to be a reference book for professional workers (Spicer, 1979). Over 2000 copies of the 160 page book were printed and distributed to professionals such as GPs, OTs, social workers, community and hospital nursing staff, day and residential care staff, social security office staff; and to voluntary organisations and local councillors. It was also sent to public libraries, receptions at health centres and doctors' surgeries, community centres, advice centres and post offices with instructions that the book should be available for use by the public. The Media 1. Local newspapers
Over 75% of disabled people interviewed in Leicestershire said they read newspapers and the majority included local newspapers in their reading (Fitzpatrick, 1980). However, only 10 local authorities (out of 90 surveyed) had used the local press as a method of disseminating information to disabled people. Of these 10 authorities, the majority used local newspapers 'from time to time' to describe a new service or facility; only one or two advertised services as a matter of course. Regular features in local newspapers could provide a valuable and cheap source of information for the disabled public and for the professionals administering and providing services. 2. Radio and TV
About half the disabled people interviewed in Leicestershire said they listened to the radio for more than
Applied Ergonomics December 1981
229
Consumer Ergonomics three hours daily; and more than 65% watched television for a similar period every day. Peak listening time was before 10 am; and peak viewing time was early evening ( 6 - 9 pm) when 90% said they usually watched television. The most popular radio station was local radio (Radio Leicester) followed by Radio 2 (Fitzpatrick, 1980). Local radio has been used in several areas as a weekly information source for disabled people, often at the instigation of local organisations. On national radio there are the weekly Radio 4 programmes for the blind (In Touch) and disabled (Does he take sugar?). Fact sheets from these can be obtained on request, and this is an essential back up service as broadcast information merely heard can easily be forgotten or partly missed. More information could successfully be directed through radio and television as this method eliminates the need for the disabled person to ask, or to spend effort in collecting information outside the home. In the case of television the visual demonstration of an aid and an adaptation to a home, car or workplace can give valuable information which is rarely found in other methods of dissemination.
Conclusions The problems experienced by the providers of aids and services come chiefly from the poor quality, range and diversity of information presented to them. Partly due to this and partly to the whole system of obtaining information, many disabled people are currently being poorly served. They are faced with chains of referral from agency to agency and their own personal handicaps make it very difficult for them to obtain all the aids and services to which they are entitled. Improving the quality of information and ensuring that it is disseminated in an appropriate form and place for the specific audience could help to overcome some of these problems. Several different methods of getting the message across are available - some are more appropriate to professional workers providing services and others to the recipients. Written information in the form of well designed leaflets and posters is particularly suited to the needs of disabled people and their relatives but it must be freely available in the places where people go. On the other hand, handbooks and directories are more suited to the professional but access to them by the public must not be overlooked. The media, in the form of local newspapers and radio, are underutilised since it is known that they are a commonly used and popular source of information for the housebound and disabled. Finally, personal advice is extremely popular with both the medical and paramedical professions and disabled people; the employment by local authorities of a named person to whom they can turn for information would be of great benefit to both groups. Whatever method of information provision is chosen, consideration should be given to both the user and recipient of information and appropriate methods and media should be used.
230
AppliedErgonomics December 1981
References Consumers Association 1973 Which? July. Finding welfare benefit leaflets. Cooper, S. 1978 'Aids and equipment for disabled people: feasibility study into the setting up of a resource group'. Institute for Consumer Ergonomics.
Department of Health and Social Security 1978 'Social Assistance: a review of the Supplementary Benefits Scheme in Great Britain'. DHSS.
Family Fund Research Project 1976a 'The Handicapped Child and the Family'. University of York, Department of Social Administration and Social Work, FF49/2.76.
Family Fund Research Project 1976b 'Some practical consequences of caring for handicapped children at home'. University of York, Department of Social Administration and Social Work, FF57/4.76. Fitzpatrick, J.G. 1980 'The needs of physically disabled people for information about facilities and benefits'. Institute for Consumer Ergonomics.
Galer, M.D. 1977 'An evaluation of home aids and equipment for physically disabled persons'. Reports Nos 5 and 6. Institute for Consumer Ergonomics.
Gann, R.E. 1980 Voluntary Organisations Information Research Project: Help for Health Report Nos :2 and 3. Hampshire AHA(T), and British Library (R & D).
Graham, S., and Brasier, F. 1979 'The Multi-Purpose Claim Form Trial in Brighton'. DHSS, Social Research Branch. Lonsdale, G. 1978 Child: care, health and development, 4, 99-120. Family Life with a Handicapped Chitd: the parents speak.
Peel, L. 1978 'The Multi-Purpose Claim Form Trial in Salop'. DHSS, Social Research Branch.
Spicer, J. 1979 'AID: Advice and Information for Disabled People in Leicestershire'. Institute for Consumer Ergonomics and Leicestershire Standing Conference of Voluntary Organisations for Disabled. Thornely, G., Chamberlain, M.A., and Wright, V. 1977 Occupational Therapy, 40.10, 243-246. Evaluation of aids and equipment for the bath and toilet.
Warnock, H.M. 1978 'Special Educational Needs: Report of the Committee of Enquiry into the Education of Handicapped Children and Young People'. HMSO, London.