ACCESSIBILITY

As demand for accessible information grows, Alison Matthews and Rachel Samuels report on a multi-agency event that kick-started a north west of England forum for sharing good practice.
THE SHOW AND TELL PERSON CENTRED INFORMATION IN PRACTICE CONFERENCE ON 1 MARCH 2005 WAS ORGANISED BY THE ROYAL COLLEGE OF SPEECH & LANGUAGE THERAPISTS NORTH WEST ADULT LEARNING DISABILITY FORUM. A NOT FOR PROFIT EVENT SUBSIDISED BY AN RCSLT BT BURSARY, ALL SPEAKERS GAVE THEIR TIME FREE.

Conference calls:
1. The need
Discussions within the Royal College of Speech & Language Therapists North West Adult Learning Disability Forum highlighted a need to share good practice in the production of accessible information. As a result we set up a sub-group of speech and language therapists, assistants and an information worker from a variety of agencies to organise an event to kick-start the process.

2. The context
Over the years, many documents have emphasised the need for accessible information. Core NHS principles include The NHS will provide open access to information about services, treatment and performance (http://www. nhs.uk/England/AboutTheNhs/CorePrinciples.cmsx). Given that a large percentage of people with learning disabilities have difficulty in accessing written information, this presents its own unique challenge to services. Valuing People, the White Paper launched in April 2001, identifies that there is Not enough effort to communicate with people with learning disabilities in accessible ways (4.1, p.44). It adds that the challenge for public services is to begin Improving information and communication with people with learning disabilities (4.2, p.45). Signposts for Success (1998) indicated that people with learning disabilities and their families have the following information needs: Appropriate language in terms of gender and cultural awareness. Text in short clear sentences without jargon. Clear, life-like pictures that are presented in a simple and enjoyable way. Pictures, writing and the spoken word used together. Video tapes and audio tapes. Materials appropriate for people with impairments of hearing and vision. Computer programmes, models, large simple print, pictures, photographs, slides, posters, symbols, sign and Braille. Opportunities for practice and rehearsal. Involvement of carers, relatives and advocates to reinforce important messages. Allowing plenty of time. The risk in not addressing the need for accessible information is that we go on producing written information for people who are unable to read, denying them access to information about health and social activities and ultimately excluding them. As a service we have a responsibility to alter our communication to enable people to participate in planning and implementing changes and developments to their lives, health, and aspirations, whether that is their review, person centred plan, proposed house move or advice about diet. We need to remember that user led means user said and

signed, or symbolled, or drawn, or photographed, or gestured, or videoed. However, we have a decision to make in how we meet the demands for person-centred and service-centred accessible information as there is a tension here. Information can be required by a person for an event in his or her life. In producing person centred information, best practice involves individualised assessment by a speech and language therapist of a persons information needs, taking into account the persons symbolic understanding, then producing information in a format which enables them to understand. It may not necessarily involve pictures. Although it is time and personnel intensive, information can only be considered accessible and be easily measured in terms of its success - when it is person centred.

Alison and Rachel

ALISON MATTHEWS IS SPEECH AND LANGUAGE THERAPY TEAM LEADER WITH THE OLDHAM COMMUNICATION THERAPY TEAM, E-MAIL ALISON.MATTHEWS@ OLDHAM.GOV.UK. RACHEL SAMUELS IS A SPEECH AND LANGUAGE THERAPIST WITH CITY CARE IN MANCHESTER E-MAIL RACHEL@CITYCARE. ORG. OR RACHEL.SAMUELS@ MANCHESTER.GOV.UK.

we have a decision to make in how we meet the demands for personcentred and servicecentred accessible information as there is a tension
More recently political pressure has been placed on services to produce accessible information to wider groups of people with learning disability. The initial push began as early as 1995, with the Disability Discrimination Act. Under this, from October 1999 service providers have had a statutory obligation to ensure their services are accessible to everyone. More recently, Valuing People (DH, 2001) highlights the need for services to produce accessible information so people can make choices. This need is raised in sections on housing, mental health services, and people from ethnic minority communities. Information needs to be improved for carers (5.2, p.53), direct payment schemes must be accessible and there needs to be accessible sex education. Producing good service centred information is resource intensive. It needs to be produced in a variety of formats leaflets, tapes, video, and possibly in different languages, including sign. It is not simply a matter of illustrating a document with some pictures from the computer. Analysis of the language content and structure is necessary to maintain the meaning of the original document or source. It is important to remember that service centred information will always be an attempt to reach a middle ground and is therefore not truly accessible information.

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ACCESSIBILITY

Show and tell

Both requirements have inevitably led to a real increase in the demands on therapists time. One solution of the Adult Learning Disability Team in Oldham was to second Chris Marsland, a support worker from the local day centre, into the role of information worker. A secondary benefit was that Chris undertook a great deal of the organisation of the conference.

3. The state of play

Workshops and presentations ran throughout the day. However, the opportunity to gather the thoughts of such a broad range of people working with people with

Table 1. What information are we making accessible? Area identified Number a) Service required materials for an individual: Person centred plans Tenancies Personal reviews Health action plans Staff interviews and selection Employment: contracts, conditions, application forms b) Bespoke information Timetables Staff rotas Choices Accessible environment eg. using objects Reports Menu choices Medication information Personal diaries and calendars Shopping lists Feelings barometers Consequences of actions How to do information Consent About me books Moving house books c) Service level information not personalised Minutes Leaflets about services Health information, eg. videofluoroscopy, epilepsy, diabetes Policies Service reports Agendas Complaints and compliments Newsletters Information leaflets eg. sexuality, money Rights Consultation documents Referral forms Appointment letters Care plans Statement of purpose Consent Anti bullying d) Information outside of learning disability services Police information Hospital information booklets 5 4 3 3 2 1

learning disabilities was not to be missed. All participants were invited into small groups to discuss fundamental questions posed by the conference working group: 1. What information is being made accessible? (Table 1) 2. Why is information being made accessible? (Table 2) 3. What are the risks / pitfalls of making information accessible? (Table 3) 4. What is being done to reduce these risks / pitfalls? (Table 4) The collated group responses showed a high level of consensus, with a plethora of accessible information in production, and more and more being shared via adult learning disability networks. There was an almost equal split in the information that was being produced for individuals and for services. Common types of person centred information included person centred plans, timetables and staff rotas. The most frequently produced service information included agendas / minutes and leaflets around health and other community services. The drive to make information accessible functions at three levels: society, policy and individual. Within these categories the human right to information, legal requirements and enhancing quality of life for the individual

were the most frequently cited drivers. Because it is about time and its good fun also struck a chord. Risks and pitfalls divided into those identified at a service level (such as lack of coordination, ownership issues and time), issues around the purpose of making the information accessible (overloading people with in-

Table 3. What are the risks of making information accessible? Highlighted area Number a) Service 8 Lack of support, eg. funding 5 Whos in charge 4 Time 3 Reluctance to sign up / passing the buck 2 Lack of review 1 Lack of coordination 1 Lack of collaboration 1 Lack of discussion b) Common pitfalls Who is the target audience / risk of one size fits all. Not a translation service Overuse of symbols / ignoring the written content Risk of lip service Overload of information Lack of how to knowledge Fails to make information more understandable Lack of training Cause offence Preaching to the converted c) Individual Accessible to the producer and not the person / pretty not accessible / style over content Over / under estimation of receptive language levels Confidentiality issues 9 8 8 7 6 3 2 1 1 7 6 3

6 4 4 4 2 2 2 1 1 1 1 1 1 1 1 6 4 4 3 3 3 3 2 2 2 1 1 1 1 1 1 1

Table 2. Why are we making information accessible? Area highlighted a) Society level Inclusion Human rights Increase participation Gain access to services Citizenship Respect Because its about time!! Equity b) Political / policy level The law Valuing People say so To comply with local policies Political agenda Because we are told to To meet demands For person centred planning Enable user involvement Multidisciplinary team requests Increase health and safety c) Individual level Increase understanding Promote choice Give power / control and empower Quality of life Maximise communication Increase independence Increase self esteem To increase knowledge Central to support Its good fun To explain change Number 7 6 5 2 1 1 1 1 6 5 4 3 3 2 2 2 1 1 8 7 6 3 3 3 2 1 1 1 1

Table 4. What are we doing to reduce the risks of making information accessible? Highlighted area Number a) National Sharing practice Multi agency working / partnership Speech and language therapists dont hold all the knowledge of how to produce accessible information Consistency across services b) Local Training Everyone needs to agree to it and there needs to be a locally based plan Support the people doing Critical analysis Service developed information Communication strategy Know your audience c) Individual Road testing / keeping the person at the centre Variety of formats Picture dictionaries to show people what there is available Be clear who owns the information Adapt meetings and allow time Keep it simple 4 4 2 2 9 7 2 2 2 2 1 7 5 3 2 1 1

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ACCESSIBILITY

formation, overuse of symbols, lack of attention to the language used in information and a lack of clarity as who the target audience of the materials is) and those at the level of the individual, where content may be overlooked in favour of style and presentation. Finally, reduction of risks and pitfalls was largely being addressed at a national level through sharing practice and multi-agency working, and at a local level through training, encouraging a range of agencies to sign up to the process and locally drawn up communication strategies. On an individual level people attending the sessions were adamant on the need to keep the person at the centre, use a variety of formats and be sure whose information it is.

it accessible. Wendy Walker and Nevin Gouda, specialist speech and language therapists with Southwark Primary Care Trust, outlined the role of speech and language therapy in a project to use symbols in the community. The Lewisham Council Disability Discrimination Act Working Group has found interactive games useful in addressing the information needs of service users. Win, lose or draw, Lost in Translation, and Supermarket Sweep can be used at any level of training. wendy.walker@soutwarkpct.nhs.uk / nevin.gouda@wht.nhs.uk d) Making things easier to understand project Melanie Gray and Andrew Comer of the Birmingham Learning Disability Partnership Board described a multiagency approach to making things easier to understand. They gave a useful overview of the process, from developing a highlighted need into a city-wide training and advice resource. The group advise people on service centred information, with a strong message of the need to understand the requirements of the audience as far as possible. Andrew, who is a gentleman with a learning disability, added a poignant users perspective on the process. As the Lead Person for making things easier to understand employed by Birminghams Learning Disability Partnership Board, Melanie is working across organisations in Birmingham to raise awareness, and set up training and support groups. People with learning disabilities are involved in planning, delivering training and supporting organisations on a paid basis. http://uservoice.cswebsites.org/section4.aspx?page=7333 e) Multimedia and Person Centred Planning David Brown and Jill Eddlestone ran this incredibly popular workshop so people could increase their technical expertise in using multimedia and lots of different ways to make information for person centred planning easier to understand. They included examples of: easy words and pictures signs objects sound and video. See article at http://www.mencap.org.uk/download/viewpoint_janfeb03.pdf (p.20), or contact liz.stone@mencap.org f) Inclusive Technology Imogen Wedgewood ran two workshops on: 1) Using digital media for recording, sequencing and choice making activities. 2) Accessible symbols, photos software and Internet sites. www.inclusive.co.uk g) Ethnic Minority Communities and Accessible Information Naz Khan and George Dean raised awareness of considerations to take into account when making information accessible for people from black and ethnic minority communities. Very little work has been undertaken in this area. naz.khan@oldham.gov.uk h) Worth 1000 words Pete Le Grys has developed this photographic resource. He led a workshop about some things to remember when using peoples photographs in accessible infor-

mation. He explained how he went about using people with learning disabilities as models, developed consent forms and made sure people looked good. www.photosymbols.com i) The Rainbow Group at Change Three people with learning disabilities from Change used interactive exercises to engage participants in thinking about how we present and interpret information. www.changepeople.co.uk

4. Show and tell

Participants had the benefit of a number of workshops demonstrating useful resources and approaches. a) Talking Mats Joan Murphy and Lois Cameron are research speech and language therapists based in the AAC Research Unit Stirling University and speech and language therapists in Forth Valley NHS, Lois leading the learning disability team and Joan working in the area rehabilitation team in Stirling Royal. As developers of the low tech Talking Mats communication resource, their keynote speech sent a clear message of the need to evaluate the impact of any accessible system for the person / group using it. Talking Mats has been used with a wide variety of client groups and by a range of workers. Visual symbols are used to express emotions and opinions. Lois and Joan presented the results of their recent research which explored the efficacy of picture material to enable people with learning disabilities to understand. A subsequent workshop gave delegates the opportunity to hear more about their research and to try out Talking Mats for themselves. www.talkingmats.com

As developers of the low tech Talking Mats communication resource, their keynote speech sent a clear message of the need to evaluate the impact of any accessible system for the person / group using it.
j) Mencap Liz Stone, the MENCAP Accessible Communication Manager, kicked off this lively discussion on the roles and responsibilities of the range of workers with people with learning disabilities in implementing and developing accessible information. The workshop considered how to make paper based information accessible and any shortfalls this may have when the audience has a wide range of communication needs. www.mencap.org.uk The workshop also provided an opportunity to launch MENCAPs National Communication Network, which will help to develop the robust debate required to gain some level of consensus nationally. www.valuingpeople.gov.uk/documents/EventsCommNetwork.pdf k) Widgit Software / Rebus Symbols This group looked at: The new Widget Rebus Symbol set in colour The Communicate Series including Communicate In Print 2, a symbol based desk top publisher. WebWide a web browser that allows users to view pages in normal, plain text and symbol supported formats. www.widgit.com

On an individual level people were adamant on the need to keep the person at the centre
b) Visual Impairment and Accessible Information This practical workshop explored accessible information for people with learning disabilities who have poor or limited eyesight. Gill Levy from the Royal National Institute for the Blind outlined good practice in use of clear print and information on audio tape. www.rnib.org.uk c) The myth of Reasonable Adjustments Is it enough just to put signs on toilets in order to make a building accessible? Does simply putting symbols on things make them accessible? This workshop shared training resources which get across the need to think about the content of information and ways of making

References
Department of Health (2001) Valuing people: A new strategy for learning disability for the 21st century. London: Department of Health. Lindsey, M. (1998) Signposts for success in commissioning and providing health services for people with learning disabilities. NHS Executive: Crown copyright.

Acknowledgements
Thanks to all the speakers and to the conference working group of Chris Marsland, Kim Williams, Andrea Worrell, SLTP Vincent McDonnell, Scilla Reid and Jane Shelley.

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