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DEVELOPMENT OF TOOLS TO MEASURE SERVICE USER AND CARER SATISFACTION WITH SINGLE SHARED ASSESSMENT
Sources and Resources
This evaluation Toolkit is person centred and assumes the involvement of all service users and carers whatever their communication, cognitive or other support requirements. The principle is that the right communication environment is created for each individual.
Flexibility and creativity will be essential in supporting each individual to participate as fully as they are able, or may wish to, in the evaluation of their assessment.
In some, though few, circumstances it will be appropriate to gain information from other significant people rather than from the person themselves. This will be decided on an individual basis. General guidance on consent to take part is included in this Toolkit.
This section provides general guidance, tips, examples and web site details for a selection of resources. It can be usefully augmented with local information, knowledge and skills.
The Services Users and Carers Guidelines, which are in this Toolkit, contain many useful tips and suggestions about good communication. They reflect people's experiences of assessment for community care services and the difficulties they have had in communicating their views and in making themselves understood by others.
The resources section contains wider information on communication resources.
A COMMUNICATION BILL OF RIGHTS
All persons, regardless of the extent of severity of their disabilities, have a basic right to affect, through communication, the conditions of their own existence. Beyond this general right, a number of specific communication rights should be ensured in all daily interactions and interventions involving persons who have severe disabilities. These basic communication rights are as follows:
1. The right to request desired objects, actions, events and persons, and to express personal preferences, or feelings.
2. The right to be offered choices and alternatives.
3. The right to reject or refuse undesired objects, events, or actions, including the right to decline or reject all proffered choices.
4. The right to request and be given attention from and interaction with another person.
5. The right to request feedback or information about a state, an object, a person, or an event of interest.
6. The right to active treatment or intervention efforts to enable people with severe disabilities to communicate messages in whatever modes and as effectively and efficiently as their specific abilities will allow.
7. The right to have communicative acts acknowledged and responded to, even when the intent of these acts cannot be fulfilled by the responder.
8. The right to have access at all times to any needed augmentative and alternative communication devices and other assistive devices, and to have those devices in good working order.
9. The right to environmental contexts, interactions, and opportunities that expect and encourage persons with developmental disabilities to participate as full communicative partners with other people, including peers.
10. The right to be informed about the people, things, and events in one's immediate environment.
11. The right to be communicated with in a manner that recognises and acknowledges the inherent dignity of the person being addressed, including the right to be part of communication exchanges about individuals that are conducted in his or her presence.
12. The right to be communicated with in ways that are meaningful, understandable, and culturally and linguistically appropriate.
When one or more of these basic rights is violated, the dignity and humanity of the individual is also violated. The desires, needs, and unique qualities of the individual are devalued. To achieve acceptable quality of life, one or more effective and efficient means of communication must be available to an individual at all times. These means of communication must be recognised, understood, and responded to by all persons who routinely interact with the individual. Furthermore, to ensure the highest possible quality of life, every effort must be expended to enhance the development and use of a person's effective modes of communication.
The Communication Bill of Rights USA 1994
General Guidance and Tips
Thinking about the person at the centre, good communication depends on supporting and enhancing each person's communication in ways which are right for them, including:
Some people may have a "Communication Passport". This method is currently being developed, as we understand, particularly for people with learning disabilities. For an example of a communication page in one person's passport , please see p.7 in this section.
Some people may refer to having a communication handbook, developed with their families and carers and/or with the support of a speech and language therapists or other professionals.
Some people may have a multimedia profile, where information is agreed with the person and captured in different media including video and sound recordings.
"Talking Mats" is a method of communication and making choices which some people are familiar with (see p.9 for reference) .
Some people won't read a letter the whole way through. Wherever possible written communication should be short and to the point.
In general, use a plain font (e.g. Arial) and font size 14. Adapt font size to suit individual requirements. ( Please see p.8 for some good practice advice for written information)
Seating Position - Some people may have peripheral vision, or other restrictions to their field of vision.
Eye contact was identified as being crucial for many people in establishing and maintaining good communication.
Being comfortable is important; someone told us, "I like to sit in my seat and make sure that I can hear properly and that the sun isn't in my eyes and blinding me"
Background noise and other distractions can be difficult; someone told us, "Some places are really difficult, telephones ringing, doors banging, people using other rooms near by. Once I had an assessment meeting in a room with posters on the walls of drug addicts who had died. That didn't help".
Visual prompts: for some people colour graphics, print and photos, work well. For others black and white images and black on white print are better. Photos and pictures may help to illustrate the evaluation questions.
Boardmaker, Bonnington and other symbol systems can help to make written documents more interesting and more accessible. For many people however symbols are not a complete language, rather they aid understanding.
Big name badges would be helpful for some people and less embarrassing than having to keep asking names or peering at a small badge.
Text can be illustrated and broken into smaller passages by the addition of graphics. CHANGE Picture Bank has a range of images.
"Objects of Reference" are essential prompts for some people. These are objects which connect with familiar contexts for the person. These can be sensory, for example particular smells like vanilla for baking, or actual articles such as arm bands for swimming. The person's carer or support worker would be in the best position to know which objects of reference would be most appropriate.
It is possible where people have unique ways of communicating this may be interpreted in different ways by different people in their lives. Evaluators and assessors need to be aware of this and check out different interpretations if possible.
It is important not to assume a person has little or no understanding because they appear not to be paying attention or responding. Many people understand more than their response would indicate.
Some people will need to be reminded what the purpose of the visit is. Most people said that they would like to be asked about this at the start of the meeting and then reminded at intervals as agreed.
Voices on tape are appropriate prompts for some people with visual impairments and/or memory difficulties. Carers and support workers will be in a good position to help with the most appropriate tone/pitch etc for recordings.
For some people independent advocates, who have no connection to the persons care agencies or social and family networks, would be an important safeguard. Some independent advocates, especially Citizen Advocates, have a long term advocacy partnership with the person, may be able to help with understanding the person's unique communication style and also have a sense of what the person feels is important in their lives.
Choice of Evaluator (and Assessor) Many people said that they it would be very important for them to be able to have some choice about the sex and the age of the assessor and evaluator.
People being assessed and taking part in evaluation meetings should get a tips card themselves with guidelines on it like - don't open the door unless you are satisfied with the ID, you can get help to say what you want from……..
Some people felt that it would be really important that the evaluator knew before the visit that they had difficulty talking and that they were often not understood, so that they could check out the best way to communicate.
Some people wanted the evaluator to know beforehand that they can sometimes can get angry because they get frustrated by not being understood and that the anger would not be aimed at the evaluator.
Some people will need and appreciate extra time because of their speech difficulties. It is really important to let people know that extra time will be available if necessary and that the evaluator can come back to complete the discussion if necessary.
Any expenses incurred, for example travel to the evaluation meeting, should be met and ideally paid in advance to enable people to take part.
Some people were keen for the evaluation process to be advertised. Suggestions included, On TV, a poster campaign in GPs' surgeries, local newspapers, to let people know what would be expected of them and to advertise what would change as a result of people taking part.
Some people may need to have additional care arranged for the assessments day/s as they have young children within their family that they do not wish to be around during the assessment process
Excerpt from one person's 'passport'
Communication
Bill can communicate very well - but not in language. Bill uses his eyes, his emotions and his body to communicate.
Do not under-estimate Bill's ability to understand despite his lack of language.
Talk simply, but directly to him.
Use OBJECTS OF REFERENCE to reinforce awareness of activities.
Ensure that you are within the field of vision and preferably at eye level and that movements are not too quick.
Bill has peripheral vision and often will appear to be looking next to you rather than at you.
This enables him to get the best vision.
Bill sees symbols and pictures better if they are black and white.
Remember Bill's age. He is a young man; treat him in an age appropriate manner and always maintain his dignity.
Written information - some good practice advice
Use plain English. Use short words, no jargon.
Don't put too much information on the page.
Break down the information.
Use short sentences. Use bullet points.
Use clear pictures to support information.
When writing things on a flip charts or note pad :
Use bold black pens on white paper
If you use coloured pens, choose strong dark colours for contrast. Pale colours are difficult to see.
For printed information :
Don't use shiny or brightly coloured paper
If you need to separate information use a coloured border or tab on the different sections
If you want to use different coloured papers, choose pale colours and use black ink for contrast
Don't use fancy fonts and letters.
Important points should be in
bold.
Thanks to CHANGES for this text
Resources
ACE Centre advisory trust has information on using a communication passport
www.ace-centre.org.uk
Acting Up is a charity which has developed multimedia profiling to support social inclusion.
www.acting-up.org.uk
Boardmaker (symbols) has a useful web site connection
www.widgit.com
Bonnington symbols web site has useful links as well as information on their symbol system.
www.modemoperandi.co.uk/symbols
CHANGE Picture Bank - is a set of pictures to help make information easier to understand.
www.changepeople.co.uk
Communication Matters is an organisation representing people who use augmentative and alternative communication, professionals providing support and manufacturers.
www.communicationmatters.org.uk
Communication Passports - information available on putting together a passport from
www.callcentre.education.ed.ac.uk
Dementia Services Development Centre - has information on augmentative and creative methods of communication, including "Finding Your Way" - Kate Allen.
www.dementia.stir.ac.uk
Makaton Vocabulary Development Project
www.makaton.org.uk
Profound and Multiple Impairment Service (PAMIS)
www.dundee.ac.uk/pamis/pamis.html
RNIB
www.rnib.org.uk
RNID
www.rnid.org.uk
Scottish Consortium for Learning Disabilities.
www.scld.org.uk
Scottish Independent Advocacy Association
enquiry@siaa.org.uk
"See what I Mean". Guidelines to help staff question and check out the meanings they attribute to communication by people with severe and profound learning disabilities. BILD website has details.
www.bild.org.uk
Sense Scotland
www.sensescotland.org.uk
Sensory Impairment Centres (Local). For example, Fife Sensory Impairment Centre is currently researching involving people with sensory impairments in meaningful consultation. They plan to produce good practice guidelines during 2004.
www.fsic.org.uk
Speech and Language Therapy Departments (local)
"Talking Mats", Joan Murphy, AAC Research Team, Stirling University
www.aacscotland.com
UPDATE is Scotland's National Disability Information Service. With the Scottish Accessible information Forum they have produced a directory "Scottish Formats Resource". This contains comprehensive information on sources for Transcription, Translation and Interpretation services available in Scotland:
Transcription: Audio, Braille, Computer disk, Easy to read, Moon, Print, Tactile diagrams.
Translation and Interpretation Services: British Sign Language (BSL) Interpreters, Lipspeakers, Notetakers, Palantypists, Sign supported English
(SSE) Interpreters, Translation from English to other languages and vice versa, Interpretation from English to other languages and vice versa.
www.update.org.uk
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