Number 41 • January – June 2008

Enjoying books! eafblind International was formerly known D as the International Association for the A message from the Education of Deafblind People. DbI Review appears twice yearly, the two president editions are dated January-June and July- December. Dedicated to the memory of Mike Collins. The editor will be pleased to receive articles, news items, letters, notices of books and information on forthcoming events, such as conferences and courses, concerning deafblind children, young adults and older people. Photographs and drawings are welcome; they will be copied and returned. All written material should be in the English language and may be edited before publication. It should be sent for publication to arrive by the date below. Opinions expressed in articles are those of the author and should not be understood as representing the view of DbI. DbI Review is also available on disk. If you are interested in receiving your copy in this format, please contact: DbI Secretariat Post Box 9601 Janakpuri New Delhi – 110058 India [email protected] Fax: 91 – 11 – 25618430

ruly a great, gentle international level with Editor Eileen Boothroyd giant of a man. Many all organisations and of us still have a agencies within the field of Design T Geoff Dunn problem coming to grips deafblindness. As a matter of Distribution and DbI Membership with the loss of this dear fact, he was very active in the DbI Secretariat friend, even though he is creation of the Memorandum DbI Website certainly still with us in spirit of Understanding (MoU) Eileen Boothroyd and The Secretariat and reflected in many of our with ICEVI, and we are Editorial Office Sense activities and developments. finding practical areas for co- 101 Pentonville Road In fact, many of the actions operation. Following up from London N1 9LG under way have been this, recently, we have signed United Kingdom initiated or supported by an MoU with The World Tel: +44. 0845 127 0060 Mike. His contribution to Federation of the Deafblind Fax: +44 0845 127 0061 the well-being of deafblind at the meeting in Zagreb Email: [email protected] http://www.deafblindinternational.org children, adults and their of leading organisations families, our organisation in Europe of/for Deafblind Cover: Communicating at the Perth conference and membership has been of people. We investigated (Courtesy of Sense’s Foundation Inc.) huge importance. areas of communication, Mike has always insisted interaction and future upon the importance activities together. of collaboration at an The development of the

LAST COPY DATE FOR THE NEXT EDITION: 20 October 2008

2 • DbI Review • January – June 2008 strategic plan is well in Sense International, India, CONTENTS hand, the proposals have for undertaking a heavy A Message from the President page 2 been ratified, and people programme of work to have volunteered and been ensure a smooth transfer. Contents page 3 identified to carry out As always, we are extremely Articles the individual tasks to be grateful to our Networks, The importance of having “Good Taste” undertaken. I would like and in particular, the David Brown pages 4-7 to thank those who have organisation of the three Access to Literacy: books for all kindly offered their time major events taking place in Stuart Aitken and Paul Nisbet pages 8-11 and energy to ensure that the autumn, where I hope Deafblind International can many of our members will Australian Accommodation grow and develop. Mike have the opportunity for in Support System Trish Wetton pages 12-16 was instrumental in the depth discussions on priority first working group some themes. I hope to see many Brazil Forum years ago that was set up to of you there. Stan Munroe pages 26-27 investigate the thoughts and Another DbI activity which The UN Convention & Civil Society reflections of our members gives me special pleasure to Lex Grandia pages 28-29 on how they would like to invite you to is the European Using books with deafblind children see the future of DbI. This Conference planned for Brigitte Lastere and was a milestone and very September 2009 in Italy. I Ghyslaine Gimene pages 36-37 important to where we are have been living in Italy now “Education for All” Campaign today. for 20 years, and from past Larry Campbell page 39 The influence of our experience of international Working with the WFDB dear friend and colleague events organised here, I Ges Roulstone pages 40-41 can be felt in everything am sure that it will be an we are working on at the exciting and beneficial Network News pages 32-34 moment, but I would also experience for all. Country News like to mention some specific As a final note, as you Canada pages 18-19 developments in the last year without doubt know, Tony or so. Best is in the process of Australia pages 20-21 By the time you are leaving Sense for a new Ireland page 21 reading this, we are in the professional challenge. I am Romania pages 22-23 process of finalising the sure you all will agree with handover of the secretary me, in thanking Tony for his Scotland page 24 and secretariat functions, constant support for our Courses and Conferences we had two fantastic bids organisation. We wish him 7th European Conference page 17 for these really important well in all his endeavours roles. This made our choice and future. Somehow I have 7th Seminar of the Acquired extremely complicated and, the feeling we have not Deafblind Network page 25 after careful evaluation, it seen the end of Tony in our 1st European Festival of Specific was decided that Senses field, probably a new small Abilities of Deafblind People pages 30-31 Foundation, in Perth, corporate could emerge! Co-creating Communication Australia would be given the As always I would with Persons with Congenital task. We all look forward like to thank all of our Deafblindness page 35 to a fruitful relationship membership, network Publication with our new secretary and leaders, management secretariat. I would like to committee, council and all Meaning Making page 38 take this opportunity to who contribute so much Secretariat and Management thank Sense International in their leisure time, to Secretariat News pages 41-42 for the wonderful support our organisation and, in they have given to us over consequence, to deafblind Membership form page 43 the years. To ensure the people and the significant quality of transferring the others in their lives. office successfully, I would like to thank Sumitra and William Green

January – June 2008 • DbI Review • 3 The importance of having ‘Good Taste’

The importance of having ‘Good Taste’ The power to change the lives of persons with deafblindness around the world

David Brown, from California Deafblind Services, continues his very successful series of articles about the senses and how they interact

aste (the gustatory are distributed over the trigeminal nerve (the fifth sense) is the sense that epiglottis, the soft palate, cranial nerve) in the tongue T drives our appetite, and and the laryngeal and oral and the oral cavity. Facial also protects us from poisons. pharynx. The taste receptors palsy results from trigeminal The senses of taste and are sensitive to chemical nerve damage so is likely to smell are very closely linked, stimulation provided by involve some compromise to although stimuli through food substances dissolved the full and effective sense each of these senses travel in saliva in the mouth. of taste. We know that in by very different neurological Many nerves are responsible the population of children routes to reach the brain for transmitting taste with CHARGE Syndrome, for and provide information information to the brain, and example, about 43% have about environmental because of these multiple damage to this fifth cranial events and factors. Previous neural pathways a total nerve, which must present an visual, auditory and tactile loss of taste is very rare. additional, taste, difficulty to experiences can become Alongside distinctive and their other challenges with powerfully attached to identifying taste information eating and drinking. certain taste sensations and (for example, tastes that Infants experience taste memories, and can stimulate we might refer to precisely sensations before birth as strong taste anticipatory as ‘banana’ or ‘coffee’ or the first taste buds appear expectations. ‘Parmesan cheese’), there at about 8 weeks gestational The taste receptors, are less specific and more age, and a foetus sucks and located in small areas called generalised aspects of taste swallows up to 1 litre of taste buds, are distributed sensations (those responding amniotic fluid every day, so at throughout the mouth, right to stimuli from the skin the time of birth a functional down to the oesophagus. surface such as stinging, sense of taste is already The tongue has the most burning, and chilling) well-developed. Newborn of these receptors, about which can be induced by infants have a high level of 65% of them, but the rest many foods through the discriminatory taste because they have a great number Many nerves are responsible for transmitting of taste buds (about 7,000), “ and the number actually taste information to the brain, and because of continues to increase for a period after birth. But the these multiple neural pathways a total loss of effectiveness and the number of the taste buds decreases taste is very rare with advancing age, so that a ” 60 year old person probably

4 • DbI Review • January – June 2008 The importance of having ‘Good Taste’

has only about 2,000 of them to dehydration, can suppress the Japanese for a long time remaining. You may have the effectiveness of the sense but has only recently been experienced older people of taste. This dryness can also recognised in Europe and complaining about the be a common side effect of a the US, where we used to increasing blandness of foods number of medications (for think there were only four and needing more salt or example antidepressants, or taste groups; it’s the taste of spice or sugar in their meals antihistamines) and also of a protein (think of bacon for to stimulate their taste buds. number of diseases (such as example). Many books and Certain medications can be diabetes). articles have diagrams that responsible for taste loss and There are specific types of show maps of the human should be reviewed in any taste cells that are stimulated tongue with distinct areas child suspected of having by each of the five taste that respond to each of these disturbance of the sense of groups – sweet, sour, salt, five taste groups, but now it taste. Excessive dryness of the bitter, and umami. This last is thought that these maps oral cavity, for example due taste has been known to are very over-simplified. Taste

January – June 2008 • DbI Review •5 The importance of having ‘Good Taste’

sensation can be localised Glutamate (MSG) does the response even if we loved on the tongue but sensitivity same, which is why so many strong black coffee. to all tastes is distributed manufacturers use it as an across the whole tongue, additive in processed foods – So why does the sense and indeed across the other it makes us want to eat them. of taste go wrong? regions of the mouth where Bitter and sour tastes cause l Advancing age. there are taste buds, but aversive, avoidance reactions certainly some areas are more because most poisons are l Dehydration. responsive to certain tastes bitter, and food that has l Certain medications that than to others. gone bad turns sour. cause excessive dryness in The sense of taste drives Between 75% and 90% of the mouth. the appetite and protects what we think of as ‘taste’ is l Certain illnesses. us from poisons, so it steers actually ‘flavour’, which is a l Impairment or combination of taste, smell, malfunctioning of other texture and temperature senses, including smell, “Between 75% and 90% of sensations. With the sense touch, vision and hearing. of smell completely blocked, l Associations made with what we think of as ‘taste’ is for example, the sense of previous unpleasant taste becomes remarkably experiences that can result actually ‘flavour’, which is a ineffective (have you ever in extensive taste aversions.

tried to enjoy eating a meal l Lack of use. combination of taste, smell, when you are completely texture and temperature congested with influenza?). Taste and children As infants increase their with deafblindness sensations. With the sense experience of life they also come to associate visual So, there are obviously of smell completely blocked, and hearing information reasons why other sensory with taste memories, so impairments might interfere for example, the sense of that strong expectations with the effective working and associations are already of the sense of taste. Nerve taste becomes remarkably unconsciously operating for damage, especially to the fifth cranial nerve is also likely ineffective even quite young children. ” We can check this out to cause under-functioning for ourselves. With our of the sense of taste. Every us towards the right food noses held to block smell individual’s response to taste groups and away from information, something that is very unique, and seems to the wrong ones. We need looks like cheese but tastes result from a combination carbohydrates, which is like a doughnut would be of experiential factors and why we like the taste of an unpleasant taste surprise, genetic makeup. In the sugar so much, and we are and produce an aversive population of children with attracted to salty tasting response like gagging and deaf-blindness there is almost foods because we must spitting, even if we actually the same wide variability of have salt in our diet. We also liked the taste of doughnuts. taste preferences that are have an need for protein, Equally, if we held our noses encountered in the rest of the and amino acids are the and closed our eyes and population. The exception building blocks for proteins, heard the sound of a cork is the significant number of so the taste quality umami, popping from a bottle and children with deafblindness which is the meaty, savoury then the sound of liquid who are reported to need taste, drives our appetite being poured, all familiar very strong tasting flavors, for amino acids. Bacon is a indicators that a glass of things like sugar, ketchup, classic food that stimulates wine was on its way to us, chili sauce, and salt, added to the umami receptors but then we drank and tasted their meals before they will because it is a rich source of strong black coffee, we eat them. This may reflect the amino acids. Monosodium would have an aversive taste impact of limited sensation

6 • DbI Review • January – June 2008 The importance of having ‘Good Taste’

“For children with deafblindness taste and smell preferences might be more strongly linked to the motivation to eat than they are for other children, so it is important that these preferences are ascertained and respected for each child if significant problems with eating and with nutrition are not to result” coming in through the other What can we do to can help to ameliorate senses of touch, temperature, help? the impact of under- smell, and vision rather than functioning taste sense, l Respect the child’s taste specific damage to the taste because, in sensory terms, preferences as much sense itself. For children everything is designed to as possible, while also with deafblindness taste join up and work together. encouraging exposure to and smell preferences might a wider range of taste, be more strongly linked to texture, and temperature l If possible, consultation the motivation to eat than experiences. with a feeding therapist they are for other children, and a dietician can be so it is important that these helpful for advice on a wide l Think about the tastes of preferences are ascertained range of aspects of eating the child’s current diet and respected for each child and drinking. if significant problems with and find ways to focus the child’s attention on eating and with nutrition As with any sensory these, maybe by enhancing are not to result. A severely deficit, poor functioning food and drink flavors in restricted diet, for example of the sense of taste can acceptable ways, and by of liquid formula, can result be difficult to identify and keeping different foods in a very inexperienced assess, particularly when separate rather than and under-used sense of it is only a part of a wider blended together. taste, so that tolerance and pattern of sensory and other preferences can become very impairments. narrow indeed. In extreme l For children who are entirely tube fed on form, aversive responses David Brown formula, seek advice from to taste, texture, and Education Specialist a feeding therapist for temperature inputs in the California Deaf-Blind Services safe ideas to give taste mouth can stimulate choking, 1600 Holloway Avenue/ experiences which might gagging, and vomiting, so, Pacific Plaza one day help to move the again, it is important to San Francisco, CA child on to oral feeding. observe closely and interpret 94132-4201 carefully in order to build up a clear picture of the child’s l Work that improves the Tel : 415-405 7559 preferences and capabilities. functioning of other FAX : 415-405 7562 sensory systems (such as Email : [email protected] smell and touch and vision)

January – June 2008 • DbI Review •7 Access to literacy: books for all

Access to literacy: books for all

Stuart Aitken and Paul D. Nisbet discuss the range of issues around accessible formats and how helpful they are for deafblind people.

ver the past 10-15 range of formats available? that would have allowed her years many countries We begin with the story of to turn the electronic book O have made it easier one pupil we know. pages using switches. Had to produce print materials Helen is in Primary 7 the book been available in in adapted formats, without (approx. Year 7 in England, switch accessible format she having to seek prior approval or sixth grade in USA) at would have had independent Stuart Aitken from authors or publishers. her local school. She has control of her own reading. Each country operates its arthogryphosis, a physical Readers of DbI Review own checks and balances disability such that she uses might at this point to ensure compliance. an electric wheelchair. She legitimately ask: What In the UK, for instance, cannot handwrite or hold has Helen’s story got to adaptation for individual or manipulate objects. With do with access to literacy use is covered by a standard support, she can type on a for deafblind people? In photocopying licence. If the keyboard. She loves to read response, one could argue accessible format is to be but is frustrated because that, if Helen had had Paul Nisbet made available to others she cannot hold a book or associated visual and hearing who also meet exemption turn pages. Helen could impairment, in addition criteria, a special licence has access printed books with to her physical difficulty in to be applied for, known as a help from another person, handling books, she would CLA VIP Licence (CLA, 2002). or use a mechanical page- still not have been able to A web-based notification turner2. At a cost of £2000 access her desired book in system1 operates, so that – £3500 ($4,000-$7,000) a suitable format. Those information can be posted and weighing in at 6.5Kg formats that were available to a national database this solution was considered might, possibly, have of resources in accessible impractical, especially as she addressed her visual support formats about where to was about to enter secondary needs, but they would still locate print material in an school where subject classes not have addressed the accessible format. Anyone would mean someone having literacy support needs that seeking print material in an to transport both laptop resulted from her physical accessible format can check and mechanical page turner impairment. the website to find out if between classes. If Helen had been deafblind someone has already done One solution was to source she would not have been the work and locate the a digital version of the book the only one to benefit from copy, provided copyright that Helen could read on switch accessible digital exemption criteria are met. computer and use switches versions of print materials. A question of interest to turn pages. Helen wanted Brown and Bates (2006), to deafblind people, to read Jacqueline Wilson’s among other authors, their parents, carers and The Suitcase Kid (Wilson, have drawn attention to a practitioners is whether the 1993). A search of Revealweb continuing trend showing accessible formats available did indeed return copies of the changing nature of are likely to be useful to the The Suitcase Kid – in Braille, deafblindness, citing for child they work with. Is, for giant print, various large font example data from the 2003 example, the changing nature sizes, and also Digital Talking USA National Deaf-Blind of deafblindness (Brown & Book format. There was no Child Count. That year it Bates, 2006) reflected in the listing for a digital version listed over seventy causes of

1 Was http://www.revealweb.org.uk, now http://librarycatalogue.rnib.org.uk/ 2 Available e.g. from http://www.qedonline.co.uk

8 • DbI Review • January – June 2008 Access to literacy: books for all

“Some children at the level of emergent literacy will benefit not just from individualised materials but may also want to access materials that have been prepared for someone who required a similar adapted format”

deafblindness. Of the 10,000 from individualised materials Boardmaker (Mayer Johnson children on the census, but may also want to access Picture Communication 60% were reported to have materials that have been Symbols, 1981) represent physical impairments, 68% prepared for someone who an increasingly important having cognitive impairments required a similar adapted resource for some (National Deaf-Blind Child format. Deafblind children deafblind people, not only Count Summary, 2004). who do progress to Koenig’s to support their personal Not all deafblind childen basic or functional literacy communication but also in who have physical or levels (Koenig, 1992; Venezky, support of emergent literacy. cognitive impairments will 1990), or who are at the cusp Increasing consideration is benefit from switch access to between learning to read and also being given to the use print materials at the literacy reading to learn (e.g. Chall, of sign language support level required to read and 1983), are more likely to to Deaf children either to understand The Suitcase Kid. want to access print materials accompany text or, in the For many, the experience in alternative formats. What use of video clips showing of reading will be one of formats are available to signing, as a way of assisting appreciating the overall them? Is The Suitcase Kid the understanding of phonics context that forms part of the the only book not available at the stage of emergent routine of bedtime stories. in switch accessible format? literacy (Brennan, 2004). Miles (2005) eloquently If not, what others are None of these adapted relates some of the early available? formats featured in the experiences a deafblind Returning to Revealweb database of accessible child might associate with we searched for adapted formats in which print reading: a father’s breathing; books in the Oxford Reading materials were available. the vibrations of sound Tree series (Oxford University There are many possible in the mother’s chest as Press), a popular UK scheme reasons for a shortage in the she reads; the smell of for teaching pupils to read. range of adapted formats. the paper – are examples We found a range of series A simple explanation could of the earliest stages of titles available in one or more be that, in the UK at least, reading characterised as adapted formats of Braille, copyright legislation (OPSI, emergent literacy (Smith, giant print, large print, audio 2002) permits materials 1989). Miles goes on in her for blind or partially sighted to be adapted, but only article to describe a number people. None in the series if the person has a visual of practical techniques was available in a format impairment. As hearing and strategies that can that would allow a switch impairment is not exempt help improve access to user to access the book under the legislation it literacy during the phase independently. In fact, out would be unreasonable, of emergent literacy (Miles, of the 110,000 plus titles according to the simple 2005). Many techniques and listed in adapted formats, no explanation, to expect strategies will depend on title was available in switch materials to be available in developing materials that are accessible digital format. formats accessible to those highly personalised for an Switch accessible digital with a hearing impairment. individual child, especially if format is not the only (Though publishers, if the child is at the emergent adaptation likely to be of approached directly, may literacy level. interest to teachers and well give their consent.) Nonetheless, some children parents of deafblind children. No doubt this is part of at the level of emergent Materials offering symbol the explanation but it does literacy will benefit not just support using such as lead to some paradoxical

January – June 2008 • DbI Review •9 Access to literacy: books for all

“The changing nature of deafblindness means that there is much to be gained from findings in other fields of enquiry.” situations. Copyright law The first is a general point. Finally, readers might be will allow materials to be The changing nature of interested to know what adapted for a deafblind deafblindness means that happened with Helen. child. If, however, he or there is much to be gained Confident that she was she needs sign language from findings in other fields covered by copyright supported materials, the of enquiry. In addition exemption, and being unable child’s visual impairment will to Miles’ recognition of to find an accessible version, allow materials to be adapted the importance of Deaf we scanned the book into for sign language support, education and English as computer and created but not his or her hearing a Second Language to digital versions in MS Word, impairment. improving access to literacy MS Reader and Adobe PDF What of switch accessible for deafblind children formats. We chose these formats? At this point (Miles, 2005), we would formats, in preference to the simple explanation highlight the relevance of Daisy for example, because: for not featuring in the findings from the fields of l they offer the viewing, range of formats, because assistive technology and navigation, search and exemption criteria do not augmentative and alternative study tools that Helen apply to someone who communication. required;

may need switch accessible A second, and more specific l MS Word was already materials, is found wanting. point may be of interest to installed on school For, interestingly, ‘visual readers. If we are to add computers and Helen’s impairment’ as defined switch accessibility as an laptop. MS Reader and by the act (OPSI, 2002), adapted format, how would Adobe Reader are both actually covers those who we describe or define ‘switch free;

cannot hold a book or accessible’ format? Both l MS Word and PDF are turn a page, irrespective of those adapting materials inclusive: Helen, staff and whether the person has a into that format, as well as other pupils were familiar visual impairment. Copyright the people who might then with these formats and exemption does allow print access materials so adapted, programs; materials to be adapted for will benefit from a shared l MS Word and PDF a switch user like Helen. understanding. At the level formats are interactive, It’s just that none has been of emergent literacy (Chall, allowing creation of produced or, if they have 1983), switch accessibility digital worksheets and been produced, the person might mean a Talking Book assessments; assumed that others would produced in MS PowerPoint, l scanning and OCR software not find them useful and with switch activation can generate MS Word and so did not add them to confined to an onscreen PDF files directly. the national database of equivalent of ‘turning accessible resources. the page’. At the level of Helen and her staff evaluated Helen’s story together functional literacy (Koenig, the books in the three with the detailed findings 1992) switch accessibility formats, Word, Reader and of our investigation into might require full control PDF. She chose MS Reader as accessible formats (Nisbet & (search, next page, previous the format most accessible Aitken, 2007) have led us to page, and so on) accessed by and suitable for her for this important conclusions, only a single switch. Our current book. two of which we mention work is addressing these and here. other areas.

10 • DbI Review • January – June 2008 Access to literacy: books for all

References

Chall, J.S. (1983). Stages of reading development, Nisbet, P.D., Aitken S (2007) Books for All: New York: McGraw-Hill. Accessible curriculum materials for pupils with additional support needs. Report to Scottish Brennan, M., (ed) (2004) Crowded cottage: in Executive Education Department ISBN 978 0 7559 British Sign Language, signed by Brenda Young 1535 4. Available from http://www.scotland.gov.uk/ with illustrations by Jan Miller. Edinburgh: Moray Publications/2007/06/05081600/0 House, ISBN 0954708105. Office of Public Sector Information (OPSI) (2002) Brown, D., Bates, E. (2005) A Personal View of Copyright and Visually Impaired Persons Act 2002, Changes in Deaf-Blind Population, Philosophy, and http://www.opsi.gov.uk/acts/acts2002/20020033. Needs. In Deaf-Blind Perspectives Spring Volume 12 htm Issue 3, p. 1-5. Copyright Licencing Agency CLA Visually Impaired Smith, C.B. (1989) Emergent Literacy – an Persons licence, http://www.cla.co.uk/licensing/vip. environmental concept. Reading Teacher, 42, p.528. html Venezky R (1990) “Gathering Up, Looking Ahead.” CLA VIP Licence (2002) CLA VIP Licensing Scheme: In Towards Defining Literacy. (Eds.) Venezky R, Guidelines for Licensees, http://www.cla.co.uk/ Wagner D, Ciliberti BS. Newark: International licensing/vip.html Copyright Licensing Agency Reading Association, pp. 70-74. Limited. Saffron House, 6-10 Kirby Street, London EC1N 8TS Witcher, S. (2006) Report of the Disability Working Group. Scottish Executive. ISBN: 0-7559-5141-7. Koenig, A.J. (1992) A Framework for Understanding Available from http://www.scotland.gov.uk/ the Literacy of Individuals with Visual Impairments. Publications/2006/10/16092613/0 Journal of Visual Impairment & Blindness 86, 277-284. ISBN: jvib860704. Wilson, J., (1993) The Suitcase Kid Corgi Children’s; New Edition (1 July 1993). ISBN-13: Boardmaker (© 1981, 1995) Mayer Johnson Picture 978-0440863113 (Author J Wilson; Illustrator N Communication Symbols (PCS). Mayer-Johnson Co. Sharratt). P.O. Box 1579, Solana Beach, Ca 92075, USA. Miles, B. (2005) Literacy for Persons who are DeafBlind. IN DB-LINK January. National deaf-blind child count summary: December 1, 2003. (2004). Monmouth, OR: NTAC, Teaching Research Institute, Western Oregon University.

Author contact details: Email: [email protected] Dr. Stuart Aitken is Senior Consultant with Sense URL: http://www.callcentrescotland.org.uk Scotland, Touchbase, 43 Middlesex Street, Glasgow http://www.booksforall.org.uk G41 1EE. Tel: +44 (0) 141 429 0294 Paul D. Nisbet is Senior Research Fellow and Joint Fax: +44 (0) 141 429 0295 Co-ordinator at the CALL Centre. Communication Text: +44 (0) 141 418 7170 Aids for Language and Learning (CALL) Centre Email: [email protected] Moray House School of Education URL: http://www.sensescotland.org.uk/ University of Edinburgh and Senior Research Fellow at the Communication Paterson’s Land, Holyrood Road Aids for Language and Learning (CALL) Centre, Edinburgh EH8 8AQ University of Edinburgh, Paterson’s Land, Holyrood Email: [email protected] Road, Edinburgh EH8 8AQ, Scotland, UK URL: http://callcentrescotland.org.uk Tel: +44 131 651 6235 http://www.AdaptedDigitalExams.org.uk Fax: +44 131 651 6234 http://www.booksforall.org.uk

January – June 2008 • DbI Review •11 Australian Accommodation Support System

Twelve lessons from the development and operation of an australian accommodation support system for deafblind adults

trish Wetton CEO, Forsight Foundation for the Deafblind, and Mike Steer from the Royal Institute for Deaf & Blind Children, and the University of Newcastle, NSW give us an introduction to the Foresight principles

Forsight Foundation sponsorship for research.

staff firmly believe that l To become a model of best each resident is a unique practice in the provision of and important individual. services for adults who are The agency’s Board, deafblind with additional staff, the residents, their disabilities. families and advocates do all in their power to In its 30 years successful foster a service model experience at developing that is based on mutual and managing a reasonably respect. Staff members large accommodation and are trained by the agency support system for deafblind n Australian with to adopt a person-centred adults, Forsight Foundation’s sensory and multiple approach to all aspects of management, staff and A disabilities is a full its Accommodation Support residents have learned that citizen with the rights and Program. The agency’s the following areas are highly responsibilities accorded objectives are as follows: important to the success of all adult Australians, and the agency: is entitled to dignity and l To promote, encourage, respect. The Forsight foster and develop the Sound principles Foundation located at North care, accommodation, Rocks in suburban Sydney communication and Lesson 1 Services need was founded 30 years ago training of adults who are to be based on sound by parents of children who deafblind with additional human service policy were deafblind to provide disabilities. principles quality accommodation l To assist residents to support services and facilitate interact with others in the Forsight Foundation has training and employment for community, to protect developed and implemented adults who were both deaf their rights and treat them policies and procedures and blind with additional with dignity and respect including a Code of Conduct, disabilities; and to enhance as valued members of the and a Code of Ethics entitled and enrich their lives. In community. Meeting Individual Needs and 2008, Forsight manages eight l To assist residents to lead Mutual Respect for Others. independent group homes, satisfying lives and as far The ecology of each group with 35 full-time, part-time as possible become self- is a high priority for Forsight and casual staff providing determining. Foundation. Nurturing support to 32 adults with l To consolidate world relationships between sensory and additional knowledge and encourage residents and also between disabilities.

12 • DbI Review • January – June 2008 Australian Accommodation Support System

Left: Dance therapy group

Right: Paulette in the new sensory garden at “Jacaranda”

staff, families and Advocates assessment leads to effective etc. Proximity to public and residents is regarded as program development and transport is also highly highly important by Forsight enhances the probability of important. In planning and Foundation management. providing positive outcomes. delivering accommodation Attempts are constantly Practical Assessments support services, equal made to have each Forsight are conducted in each weight should be given to Foundation group home a resident’s own group home. day activity provision and welcoming, safe and happy Residents are more confident access to community services. home and workplace. All in surroundings and with Residents are able to access staff members focus on each people they are familiar their local shopping centre resident’s needs. The goal is with. A range of medical with one-to-one support to provide a person-centred and other Assessments are for personal shopping and service. conducted for the Lifestyle personal care appointments. Communication training in & Environment Review, the Additional one-to-one augmentative and alternative Developmental Disability support is available through methods of communication Health Unit Care Plan and the Group Home Support include finger-spelling, the Forsight Foundation Care Centre at North Rocks. Makaton and Compic. Plans. Forsight Foundation These are provided to meet obtains donations each individual communication Community presence year to provide support and needs. transport for residents to Lesson 3 Australians attend Blind Bowls, Blind Assessment with sensory and multiple Cricket, Riding for the disabilities have a right to Disabled, RAPS and Hand Lesson 2 Residents with live and spend their time Over Hand recreational sensory and multiple in the community, and not activities in the community. disabilities need to be in facilities that deny their The agency believes correctly needs-assessed. access to fellow citizens. that when group homes (including gardens) are well Assessments at Forsight maintained, residents are Foundation take into account Towards this goal, Forsight accepted by their neighbours the centrality of sensory Foundation constantly seeks and welcomed into the and multiple disabilities to alternatives to such long-stay local community. Forsight the individual resident, and programs as nursing homes Foundation welcomes local include consideration of the and institutions. The location Service Clubs to participate in whole person. Assessments of a support service is highly special events with residents. require input from the important as this can affect resident with a disability or opportunities for involvement Relationships an advocate, and from family in ordinary, everyday Lesson 4 Living in the members and carers. The community life. Residential community is not enough. importance of identifying support services need to be Relationships in daily life the range of impairments, located within easy reach with non-disabled people the way they combine and of such community facilities need as much as possible the resultant effect cannot as shopping centres, post to be fostered be over-emphasised. Early offices, community health identification and complete centres, recreational facilities

January – June 2008 • DbI Review •13 Australian Accommodation Support System

Left: Quakers Hill in Sydney

Right: Household duties

Forsight Foundation access to the Board. Under or herself. The agency seeks advocates to provide guidance from the CEO, a provides weekly Dance support to residents who do unique communication link Therapy sessions to residents. not have family members with each resident has been Positive outcomes from this or friends to assist them to developed to enable all project include enhanced make informed decisions residents to make their views communication between and choices about their lives. known and be listened to at residents, enjoyment and Links with Corporate partners any time. documented changes in allow relationships to be challenging behaviour. formed between volunteers Communication Families, friends and and residents. Working Advocates play an important bees, including group home Lesson 6 Opportunities role in the lives of deafblind garden and room makeovers for communication residents. Home visits are involve community donors- with other people is anticipated eagerly. These in-kind and residents working of primary importance highly important links are side by side on a project. in the development nurtured by staff. Professional photographers of relationships, since have become mentors to this enables choice and Home blind residents, training them decision-making as well as participation in to take digital photographs Lesson 7 Wherever community life. to expand their perception possible, remaining in the of the world using their family home with support senses of touch, sound and from the agency should smell. New opportunities for Individual Plans include be considered a viable building new relationships goals for increasing option for a person with are continually being sought. communication skills. Vision a sensory and multiple Australia, Deafblind Services disabilities. Choices NSW, Guide Dogs Association of NSW/ACT and the Deaf Lesson 5 A person with Society assist the Forsight New enquiries for a sensory and multiple Foundation to provide accommodation support disabilities has rights of opportunities for residents programs are referred to citizenship in the service to communicate with other the Department of Ageing, development process to people in their group home Disability and Home Care make views known and and in the community. Vacancy Management have account taken of Stff receive training in Committee. The Department those views offering choices to residents, provides Case Management just knowing when to and Assessment options Residents attend regular hold back to encourage to identify level of support meetings where they receive independence is important needs to ensure that all assistance to communicate to ensure that each resident viable options are considered. their views about their is given the time he or she In-home support services are group home. They have requires to make choices discussed with stakeholders a representative on the about being independent at Individual Planning Forsight Foundation Homes’ and doing things for him meetings. Committee which gives them

14 • DbI Review • January – June 2008 Australian Accommodation Support System

Forsight Foundation believes that all residents where possible, should go home to their families during Christmas and Easter breaks. Regular home visits are encouraged throughout the year.

Educational/ Developmental programs

Lesson 8 There must be a consistent and coherent approach to educational and developmental Everyday programming across activities at residential, educational, home recreational and An experienced member who are relaxed in their vocational or occupational of the Forsight Foundation familiar surroundings. services. management team attends Staff are kept informed all appointments at the of all specialist support Developmental Disability arrangements through the Forsight Foundation Health Unit (DDHU) at Royal Trans-disciplinary team requires a comprehensive Rehabilitation Hospital confidential approach using Transition Plan, Funding or attends appointments group home computers. Agreement and Health Care with any treating Specialist Plan that clearly identify the with each resident. This Comprehensive unique current and future practice ensures continuity services needs of each resident and accurate information is seeking to access the service. provided confidentially. A Lesson 10 Providing Adult learning programs comprehensive Care Plan is comprehensive supports and supported employment developed by the DDHU and on an individual resident services are facilitated by regularly reviewed. A team of basis requires a planned the agency and transport to specialists is involved in the approach with emphasis services is provided. implementation of each Care on periods of transition Forsight Foundation staff Plan. In addition, Forsight between phases, for training includes obtaining Foundation Treatment example, that which Government Certificate Plans are developed for all occurs on leaving school IV in Disability Studies hospital stays and Specialist for adulthood. and both external and in treatments to record all house training. Competent information. All new admissions require staff can provide learning Clinics are conducted an individual planning opportunities to residents regularly by Westmead approach. The Department across all programs. Dental Hospital, Dysphagia of Ageing, Disability and Clinic, Clinicall and Macquarie Home Care (DADHC) Vacancy Specialist supports University Audiology Clinic Management Committee for all residents at Forsight oversees all placements. Lesson 9 These are Foundation Group Home A comprehensive DADHC essential as part of the Support Centre at North proposal for funding is based agency’s comprehensive Rocks. Clinicians are always on Assessment outcomes and service provision. pleased to examine residents budgetary guidelines.

January – June 2008 • DbI Review •15 Australian Accommodation Support System

Residents entering the An accommodation Action Planning approach Forsight Foundation from retirement program operates identifies each situation and School would receive the at some group homes for records actions needed to same process as do adults residents who do not attend complete various tasks with who transfer from another day programs or supported a regular evaluation. Every adult service, such as an employment services full- critical incident reported to Aged Care Nursing Home, or time. management is monitored a DADHC large residential or closely until resolved. group home. StaffingLesson 12 Individuals The location of family and with sensory and multiple The Forsight Foundation friends of deafblind residents disabilities must have trans-disciplinary confidential is taken into account to support services provided approach to group home ensure that relationships can by staff who are well care, using computers with be easily maintained. Day trained, experienced and email access in each group programs and supported who are provided with home has been developed employment services, in-service training and so that all staff can work as including transport needs are supervision. one team. In-house training identified. in documentation and legal Forsight Foundation responsibility, medication Changing needs is aware that due to the management, epilepsy scattered nature of its eight management, deafblind Lesson 11 Program group homes all staff do communication skills, fire development must not work under ‘direct’ evacuation and use of take into account the supervision but ‘general’ equipment and complaints changing needs that arise supervision only. To address reporting and handling are from; improvements this isolation and the solo continually offered to all or deterioration of an shifts worked at most group staff. Quarterly General Staff individual’s condition; homes, Forsight Foundation meeting/training sessions are on-going developmental implements a strict attended by both Forsight opportunities, different recruitment and induction Foundation and Agency staff. life stages; and choices process to ensure that all Forsight Foundation made by the individual staff have the skills required provides VitalCall direct resident. to work with four or five telephone support at each residents alone before being group home. Individual The changing needs of rostered to work at a group VitalCall medallions are deafblind residents are home. provided to residents as monitored by the Forsight Deafblind residents rely required. Foundation management heavily on staff to be able 24/7 advocacy is provided and staff in collaboration to understand them so that to residents and staff by the with other services, families, they can convey their needs CEO and the ASM. Advocates and Guardians. to management. A high level A CEO Payroll A pro-active approach is of trust exists between the Memorandum containing used to ensure that early different levels of staffing. valuable information about symptoms or deterioration Each staff member receives resident care, group home of a resident’s are picked in-house training in the Life management and staffing up. The ‘Preventive activities Cycle Model to equip them matters is sent out each over the Life Cycle’ system to become skilled managers fortnight with payslips to all provides a guide for at work and in their own life staff including Agency staff. screening for age related situations. This management illnesses. Screening is firstly training provides staff The authors acknowledge identified in the Individual with the ability to manage the assistance of Sense Plan and then included in the critical incidents as they residential service DDHU Care Plan. arise and to report them. An guidelines in the development of this article.

16 • DbI Review • January – June 2008 DbI DEAFBLIND INTERNATIONAL

DEAFBLIND INTERNATIONAL 7TH EUROPEAN CONFERENCE 2009 TIDES WAVES AND CURRENTS in research and action

22nd to 27th September 2009 Senigallia, Italy

www.dbiconference2009.it

January – June 2008 • DbI Review •17 SubheadCountry news here

Canada CDBRA and Grupo Brasil

tan Munroe, CDBRA, travelled to Brazil in Following this Conference, Stan, on S November 2007 as part of the continuing invitation of, and accompanied by relationship between CDBRA and Grupo Brasil representatives of Grupo Brasil, Shirley that was first established in 2003. Rodrigues Maia and Laura Monteiro Stan was invited to attend the II Anccilotto, travelled and lectured in several International Forum on Deafblindness and locations in the Northeast of Brazil. Multiple Impairment / IV National Meeting The locations were Forteleza (Ceara State), of Families and Specialised Professionals / VI Teresina (Piaui State) and Timon (Maranhao National Meeting of Deafblind Individuals in State). Stan made presentations on Congenital the city of Aracaju, Sergipe – Brazil, 12-16 Rubella Syndrome with special reference to November, 2007. later health effects and prevention and, with His participation included a presentation at the assistance of his wife Carol Munroe, the the Panel Session on health and educational Canadian Concept of Intervention. worldwide outlook about prevention, Shirley took the opportunity to outline the diagnosis, attendance and services for persons services of Grupo Brasil to a location of the with multiple impairment and deafblindness country where services for deafblind persons and a Round Table discussion on Studies in are in their very infancy. Brazil and Canada about the late effects of The presentations that were made during Congenital Rubella. Brasil’s Deafblind Awareness Week.

Deafblind Ontario – a new name!

eafBlind Ontario Services (www. New developments D deafblindontario.com) is a not-for- After 18 years of enabling adults who are profit organization that creates safe and deafblind to live more independently, the comfortable environments that enable organization formerly known as Independent deafblind individuals throughout the province Living Residences for the Deafblind in Ontario, to live more independently. DeafBlind Ontario has launched a new name, new logo, and Services currently supports deafblind adults new holiday gift drive to help increase public with community-based housing, trained awareness around this complex disability. intervention support, independent living skills, “As the province’s largest not-for-profit work experience and social programs. organization providing housing and 24/7

18 • DbI Review • January – June 2008 The VestibularCountry Sense news

Conference brings out true spirit of intervenors Canada continued In addition, presentations from individuals who are deafblind were extremely well received. Examples of presentations during the 3-day event included: Consent, Privacy, legislation & Medical Intervention, Holidays for the Deafblind-What a Difference They Make; Understanding Usher Syndrome; Usher Syndrome Type 3: One of the Lucky Ones; Charge Syndrome 101; Deaf and Hearing Cultures: Understanding Each Other; Intervenors: Allies in Empowerment etc. When conference organizers first sat down to plan this event, they came up with an am motivated and energized to be ambitious theme: The Spirit of Intervenors: a better Intervenor.” Just ten words Expanding Our Capacity & Profession. It was “I from one participant, but they speak a theme that clearly struck a chord with volumes about the success of the Deafblind participants. Coalition of Ontario’s recent Intervenor A resounding 94 per cent of the 260 training symposium, which was held at conference delegates said the weekend event the Deerhurst Resort in Huntsville, Ontario, met their expectations. “This was my first February 20-23, 2008. conference of this kind,” said one attendee. “I With a focus on Intervenors and the vital found it extremely informative, well-planned, role that they play in the lives of people who and a great way to meet new people.” are deafblind, the conference was designed “One of my favourite experiences of life,” to address the specific needs of direct service declared another enthusiastic attendee. “I staff working with persons with acquired and thoroughly enjoyed hearing the personal congenital deafblindness. life experiences and subsequent gifts shared The conference was opened by the by persons with deafblindness,” said one Honourable Madeleine Meilleur, Minister of participant. Community and Social Services (Ontario The Feedback from the conference will help three-day event that followed featured a organizers plan similar events in the years variety of speakers from Canada, the United ahead. Because the 2008 conference truly States and the UK. brought out the spirit of Intervenors, the Renowned for their experience and theme is likely to be an enduring one. expertise, these speakers made presentations on a number of topics relevant to the field of Deaf Blind Coalition dual- sensory loss. of Ontario

Deafblind Ontario – a new name!

support services to deafblind adults, house that shelters the ability to see and DeafBlind Ontario Services has been creating hear. The new identity coincides with the supported-living solutions for almost two organization’s plans to further enhance decades,” explains Roxanna Spruyt-Rocks, its services offered to deafblind adults Executive Director of DeafBlind Ontario — including adding another home to its Services. “More support is needed however, collection of residences located throughout to ensure all deafblind adults have access to Ontario and developing innovative outreach the support they require.” programs to help deafblind individuals live The new logo symbolically represents a more independently.

January – June 2008 • DbI Review •19 SubheadCountry news here

Australia Electronic media into media access for people who are Deaf or hearing impaired, blind or vision impaired, access issues announced in October 2007 (ABF Update of October 2007 item 6), will go ahead. ustralia’s National Disability Services (NDS) The inquiry had planned to consider audio A agency reports that a DVD entitled ‘Keys description services as well as captioning and to Living Together: Then we were three’, that was due to be completed by 30 April 2008. has been produced by the Commonwealth’s Department of Family, Housing, Community Services and Indigenous Affairs, is not The other film festival accessible to new parents who are blind or vision impaired, or Deaf or hearing impaired. Entries have been accepted for Australia’s Steps are currently being taken to caption the only disability film festival, to be held in DVD. NDS and the Australian Blindness Forum Melbourne in September 2008. Entries for the have asked the Commonwealth Department to 2008 festival could be of any length or genre, take greater steps to audio describe the DVD. but they must be made by, with or about In the meantime, access to a Pdf document people with disability. All of the selected films by that name is via the Commonwealth will automatically enter the running for the Department’s website at http://www.facsia. best film prize of A$5,000, with other prizes gov.au/internet/facsinternet.nsf/vIA/ yet to be announced. For more information families-keys_to_living_together/$file/keys_ visit http://www.otherfilmfestival.com/ newparents.pdf. Deafness Forum Australia, in its January Review of accessible 2008 One in Six Newsletter, includes an update from Media Access Australia about the rates public transport of captioning and audio describing DVDs over the last 16 months – For information on these standards please go to http://www.deafnessforum.org.au/ files/u1/One_in_Six_January_2008.pdf. Media A Draft Report on the Review of the Access Australia also provides an update on the Disability Standards for Accessible Public availability of audio-described DVDs online at Transport has been available for public http://www.mediaaccess.org.au/audio comment on the review website http://www. description/default.aspx. ddatransportreview.com.au. The Australian Visual Software Distributors Association (AVSDA) has released a DVD Focus on students with accessibility framework document, affirming its commitment to making available access disability features such as captioning and audio description. The objectives of the framework A new DVD, ‘The Critical Bridges: Meeting are to promote the availability of access Challenges at Points of Transition in Education features for people who are deaf or hearing by Working Together’ has been produced impaired and people who are blind or vision by the NSW Department of Education and impaired. AVSDA states that its members are Training, the Disability Council of NSW and committed to increasing the range of products the TAFE NSW Disability Unit. It aims at available with access features. Complaints can assisting teachers, trainers and employers to be made directly to AVSDA by email to info@ better understand the needs of students with avsda.com.au or via the website http://www. disability at three critical points of transition: avsda.com.au/dvdaccess.asp where the pre-school to school, school to post-school AVSDA members are also listed. and acquiring a disability in adult years. The The Minister for Broadband, first segment features a secondary school girl Communications and the Digital Economy is who is blind. still considering whether or not the inquiry For more information or to order a copy email [email protected]

20 • DbI Review • January – June 2008 Country news

Supporting the Advocacy Centre website at http://www.piac. Australia asn.au/news/media/20071213_fltclsdrp. continued wellbeing of families html and children The guide dog The Attorney-General has announced that 75 new services will open across Australia this conference centre year to support the wellbeing of families and children. These include 25 Family Relationship The new centre has recently been opened Centres, bringing that national network to by the Association for the Blind of WA. 65, and 22 new early intervention services The conference facilities also include the to provide individuals and families with the Woodside Guide Dog Discovery Centre. skills, education and counselling needed to For more information, go to http://www. prevent family breakdown. For more detail, guidedogswa.com.au read the Attorney-General’s media release at http://www.attorneygeneral. National conferences gov.au/www/ministers/ robertmc.nsf/Page/Media 2008 National Conference of the Round Table Releases_2008_FirstQuarter_ on Information Access for People with Print 17January2008- Disabilities will be held in Melbourne on 11 Supportingthewellbeing to 14 April, immediately after the Fourth offamiliesandchildren General Assembly of the International Council on English Braille on 6 to 10 April. More information at http://www.e-bility.com/ Flight closed roundtable/. The report on the experiences of people SPEVI Biennial Conference: The 2009 with disability in domestic airline travel in Biennial Conference of the South Pacific Australia, is now available. The report’s 112 Educators in Vision Impairment will be held pages cover the increasing barriers faced by from on 6-9 January 2009 in Adelaide. The people with disability who want to travel theme of Challenges and Choices will focus by air. There are 57 proposals that provide on vision impairment, adaptive technology, reasonable solutions to the physical, social early intervention and partnerships. For and economic costs of inaccessible travel. For more information, contact Jessica Bosnakis more information, go to the Public Interest of All Occasions Management at Jessica@ aomevents.com.

Deafblind Ireland Ireland

he steering group of Deafblind Ireland ��������� T met in Longford on Saturday 12 April. ������� Arrangements for registration as a charity in Ireland are almost complete. The group welcomed two new members, taking the total to 8. We are planning a training event in event will focus on the assessment needs of November in Dublin for professionals working deafblind children. with disabled children. All disabled children Look at the website for more information: are entitled to an assessment of need under www.deafblindireland.org new Irish disabilities legislation. The training

January – June 2008 • DbI Review •21 SubheadCountry news here

Romania Identification of babies and early intervention

ense International (Romania) continues In Bucharest to monitor the early intervention S l Up to March 2008 an impressive 4,518 programme in Bucharest and Oradea, new born babies benefited from vision and following an action plan established hearing screening at Panait Sarbu Maternity in partnership with the Government, Unit. Five children have been found with individual hospitals and support centres. hearing impairments and four have been The project has established a unique model identified with vision problems. All nine of multi-disciplinary care involving medical babies have been referred to specialist staff, specialists in deafblindness and doctors and have entered the rehabilitation representatives of the local authorities, with programme, waiting for further testing to the aim of improving family life for deafblind see if they are at risk of acquiring further children and their parents. Achievements sensory loss; made as a result of this work over the past l Ten children have joined the rehabilitation year are: programme under the supervision of the multi disciplinary team in the Early Intervention Support Centre in Bucharest.

The multi-disciplinary team at Oradea Maternity Hospital

22 • DbI Review • January – June 2008 Country news

Babies in the Dr Ioan Cantacuzino hospital Baby in Prof. Dr. Panait Sarbu Maternity Hospital

In Oradea l The programme started in November 2007. l Studies of young children with hearing Since then 1,738 new born babies have impairments have emphasised language benefited from the screening; development and often speech l A total of eleven children have been found development. Intervention for these with hearing problems and of these, children involves both education strategies currently two children are benefiting and provision and use of hearing aids. from the early intervention rehabilitation programme in Oradea. We are working A successful application made to The with the parents if other children, who are International Women’s Association for a in the process of starting the programme. hearing-screening device, allowed us to extend the programme to another maternity unit in The major observations made about the early Bucharest. After the training session in basic intervention programme are: screening organised at the beginning of l The provision of very early specialist May, two neonatal doctors will be qualified intervention should focus on supporting to screen the hearing of new born babies. parent – child interactions; Children will then be referred to the Support Centre in Bucharest. The maternity unit l The involvement of parents as active partners at every stage of the intervention will allocate a room, which will be sound process is crucial; proofed, and specially equipped for testing the newborn babies’ hearing and vision. l Studies of young children with visual “Ioan Cantacuzino” hospital is the 3rd impairments suggest that the gains maternity where Sense International (Romania) attributable to early intervention are has implemented the early intervention greatest in areas specifically affected by programme so far. visual impairment –for example, orientation and mobility; Cristiana Salomie

“The project has established a unique model of multi-disciplinary care involving medical staff, specialists in deafblindness and representatives of the local authorities”

January – June 2008 • DbI Review •23 SubheadCountry news here

Scotland Sense Scotland opens TouchBase

your desk and hear Murray on his accordion playing The Dark Isle. Yvonne wanted to give a short speech to HRH The Princess Royal and spent the morning checking and refining her words so that they were word perfect. Another service user informed me that he had “googled” HRH and knew where she lived! Then our guests started arriving and how wonderful they all were. Parents, service users, senior politicians, funders and colleagues from statutory and voluntary organisations all joined us. I felt that people were really there because they cared and I appreciated greatly the time and effort busy people made to join us on our special day. There was a sense that HRH the s I came into work on the 15th April it is everyone’s resource, I felt that people Princess Royal I was inevitably reflecting on the have a sense of ownership and that everyone journey our organisation has made wants it to work. A The people who attended enjoyed the from our humble beginnings in a cloakroom to preparing today for the Royal opening of day and got a flavour of our work. It was TouchBase. Our centre is usually an energetic our way of saying thank you for the trust so place to work but this morning it was more many people have placed in Sense Scotland. lively than usual. Staff were bringing in I know guests enjoyed the performance flowers, cleaners were arriving, final lists were because most of them told me so. The service being prepared, name badges were being users had great fun putting it together and laid out, catering was gathering apace, signs the whole experience gives young people were being put out, technology was being confidence, which can lead on to other checked, finishing touches to the stage, opportunities. For instance some of the lighting, seating etc were all being done by service users are now starting to work in different groups of staff. TouchBase and who cares if the mail arrives a As the morning went on the police arrived bit later? and much to the delight of service users, It was a wonderful day and our fantastic Sam the police sniffer dog came too. The centre is now open, lively and energetic with ever-patient policeman told service user service users at the heart of all that we do. and staff alike “please don’t pat Sam he is trying to work!” Service users were now Gillian Morbey CEO rehearsing and what a privilege to sit at Sense Scotland

Brian Crichton presents his painting to Entertainment from centre users Dowager Countess of Strathmore

24 • DbI Review • January – June 2008 ADBNSubhead Seminar here

B E R G E N W E L C O M E S 7th Seminar of the Acquired Deafblindness Network 8 -12 October 2008

Activity, Ability and Participation: acquired deafblindness in all stages of life Book your place now!

Our hosts: Statped Vest Please contact: Grethe Nyborg: [email protected]

Statped Vest www.deafblindinternational.org

January – June 2008 • DbI Review •25 Brazil Forum

Grupo Brasil hosts the second International Forum

on Multiple Disabilities and Deafblindness and celebrates its 10th Anniversary, November 2007

he Second International This five-day event was of Education, the National Forum on Multiple organized by Ahimsa Coordination Centre for the T Disabilities and (Educational Association for Integration of the Persons Deafblindness together the Multi-Handicapped), with Disabilities, Sense with the Fourth National ABRASC (Brazilian Association International: Latin America, Meeting of Families and of Deafblind People) and Perkins School for the Blind Specialized Professionals and ABRAPASCEM (Brazilian and the Embassy of Canada the Sixth National Meeting Association of Parents and The general theme of the of Deafblind People were Friends of the Deafblind and International Forum was successfully held in Aracaju Multi-Handicapped), which, “Holding Hands: Education, (Sergipe State) Brazil, together with other facilities Health and Human Rights November 12-16, 2007. The in Brazil, comprise Grupo for Everybody”. Speakers forum and meetings were Brasil. were in attendance from held at the Central Campus, These successful seminars Brazil, Canada, Argentina, University Tiradentes in were supported by the Colombia, Ecuador, and Aracaju. Brazilian Secretary of the UK. Participation Special Education/Ministry included persons with deafblindness, family members, professionals from Hats off to the wonderful success of Grupo Brasil’s the field of deafblindness, “ and representatives from many professionals, family members and volunteers Government. Special keynotes and panel under the leadership of Shirley Rodrigues Maia! presenters known to DbI ” included Dr. Tony Best (UK),

26 • DbI Review • January – June 2008 Brazil Forum

Ximena Serpa (Columbia), “with the benefit of guide/ Stan Munroe (Canada), interpreters (or Intervenors) Dr. Marta Lucia Tamayo our main goals are to prove Fernandez(Colombia), to government authorities Gabriela Rovezzi (Argentina), that we are able, even Shirley Rodrigues Maia without our vision and (Brazil), Sonnia Margarita hearing, to do whatever a V.Rodriguez (Ecuador) and “normal” hearing and seeing Claudia Sofia Indalacio person can” Pereiro (Brazil). The Grupo Brasil was presentations by Sonnia celebrating their 10th Margarita (President of the Anniversary as an Federation of Persons in Latin organization dedicated to America who are Deaflind developing services and Brazil who have contributed and Vice President of WFDB) promoting advocacy for the to Grupo Brasil’s success. and Claudia Sofia (President rights of the deafblind and Grupo Brasil also awarded of the Brazilian Association of multi-impaired population Certificates of Merit and the Deafblind) gave incredibly in Brazil. To date they have medals to Ximena Serpa uplifting presentations been successful in developing from Sense International about the successes of their services in 19 Brazilian states. Latin America and Stan organizations. Hats off to the wonderful Munroe from CDBRA Canada Both Sonnia’s and Claudia success of Grupo Brasil’s and to Hilton Perkins (given Sofia’s messages gave great many professionals, family to Gabriela Rovezzi). The inspiration to those in the members and volunteers medal’s inscription stated: audience who were deafblind under the leadership of Surdocegueira “Nao há . For example, Sonia said Shirley Rodrigues Maia! limites para o ser humano” – “that we deafblind are During the closing Deafblindness “There are no human beings that want ceremonies Shirley Rodrigues limits for the Human Being”. to fight for our own rights. Maia highlighted their We will not get pity from significant progress over the Stan Munroe anyone so we have to do our past ten years. Certificates of Canadian Deafblind and own thing”. Claudia Sofia merits and medals were given Rubella Association furthermore indicated that to a number of individuals in

January – June 2008 • DbI Review •27 SubheadUnited Nations here

The Convention and Civil Society: The Role of Civil Society

Lex Grandia’s address to the UN on behalf of the International Disability Alliance

deafblind, once wrote: “Worse than not seeing and not hearing is not to be seen and not to be heard”. This Convention is making a change: We will be seen as persons, equal before the law like anybody else, persons with dignity and many qualities. We will be heard as experts on how to make all areas of society, the environment and information accessible to us. We will be heard as persons giving valuable contributions to society. We will be seen as persons in the schools and universities, in the workplaces,in society, in cultural life, in politics, in shops and restaurants. We will be heard as It is a legal way to include et me first respected members of the all persons with disabilities congratulate all family, in the planning, into society, as full and “L parties involved designing and development responsible members of this with the entry into force of of goods and services, as society. the Convention on the Rights citizens, with all the rights I am speaking on behalf of of Persons with disabilities, and duties citizens have. the International Disability CRPD. Congratulations to We will be seen as persons Alliance, IDA. IDA is a the United Nations and whose diverse bodies, minds network of international to civil society, especially and abilities enrich ourselves and regional organisations persons with disabilities. This and society. We will be heard of persons with disabilities. Convention introduces an when we accept or refuse IDA has played a very active enormous paradigm shift. medical interventions. role in the formation and We will be seen, all of us. the work of the International the Convention is about Disability Caucus, IDC, that Worse than not seeing and all persons with all types “ was so successful during of disabilities as a part of not hearing is not to be seen the process of negotiations human diversity, including around the Convention. IDA women, children, older and not to be heard is still very active. ” persons, indigenous peoples Helen Keller Helen Keller, who was and members of cultural

28 • DbI Review • January – June 2008 UnitedSubhead Nations here

Lex with UN building behind him

“Nothing about us without us” minorities with disabilities. legislation and systems. organisations of persons Our life stories will be We, disabled persons of with disabilities. The forum heard and understood. the world, are able and assists with translations into We will be seen and heard willing to assist states and national, local and regional in the media. All this will local authorities in doing laws and policies.The forum make society inclusive. that work. Not only are we produces interpretation and This Convention gives us willing, we also insist on implementation material, a legal basis and it will be participating in the work. We launches campaigns and reflected in laws of all state are the experts on disability follows the developments parties that have ratified or issues at a local, national, around the implementation will ratify this Convention. regional and world level. and ratification of the We have legal capacity and Therefore IDA launches convention all over the may act according to our the IDA CRPD Forum. The world. The forum also assists own decisions. forum consists of all kinds with the implementation We, disabled persons of the of organisations, working of the Convention in all world, know that the hardest in the disability field, on UN agencies. The forum work is ahead of us. We want a local, national, regional continues the important all states to ratify without and international level. The work of the International reservations or declarations. forum collects expertise Disability Caucus, but now The Convention has to be on all disability issues, not in the new era after the translated to every language only from organisations of, Convention enters into force. of the world, including every but also from organisation The forum continues the sign language. All ratifying working with persons with slogan: “Nothing about us states will interpret and disabilities.The forum works without us”. implement the Convention under the leadership of Thank you. in its national actions plans, IDA, which is composed of Lex Grandia

January – June 2008 • DbI Review •29 SubheadBulgarian here Festival

National Association of The Deafblind in Bulgaria The First European Festival of Specific Abilities of Deafblind People Varna, BULGARIA 01 – 09 September 2008

30 • DbI Review • January – June 2008 BulgarianSubhead Festival here

The First European Festival of Specific Abilities of PARTICIPANTS: Deafblind persons as participants in Deafblind people will consist of the following events competitions: • First European Chess Championship VENUE: Varna – “The Sea Capital of Bulgaria”. • First European Amateur Art Festival and Varna is a very beautiful and world-famous Black Contest Sea city with sunny beaches, many sights, historical • First European Championship of General places and attractions. Physical Branches and Track-and-Field Athletics • European conference with the topic: “Sports ACCOMODATION: Boarding-house of “Professor and Culture – means for social integration of Doctor Ivan Shishmanov” School for children with the deafblind people.” impaired vision – Varna, very well adapted for • Constituent assembly of the European persons who are visually impaired. Organization of Deafblind Sports and Culture REGISTRATION AND DEADLINE: Integration Please check with the NADbB if any places are still Every deafblind person can participate in events available: by e-mailing: [email protected] as she or he wishes (at least one event, up to or by fax: +359 32/ 653 602 participation in all 5 events).

January – June 2008 • DbI Review •31 NETWORKS Acquired Deafblindness Network The Siblings Network Ges Roulstone Sense East 72, Church Street, Market Deeping, Peterborough, Lincolnshire PE68AL rom the 22nd – 27th of Tel: +01778-344-921 Fax: +01778-380-078 August “ Listen to me - 4” Email: [email protected] will be held in Glasgow, CHARGE Network F David Brown Scotland. During this family event California Deaf-Blind Services, San Francisco State University, the Siblings Network will offer a 1600 Holloway Avenue, San Francisco, CA 94132-4201, USA programme for brothers and sisters Tel: +1-415-239-8089 of deafblind children who will join Fax: +1-415-239-0106 Email: [email protected] their parents to Glasgow. Communication Network Ton Visser The programme will be decided Theerestraat 42 last minute, as it will be tailored information on this great event, 5271 GD Sint-Michielsgestel The Netherlands to the brothers and sisters joining, you can contact me or Sense Tel: +31 - 73 - 55 88 111 Fax: +31 - 73 - 55 88 994 respecting their age and interests. Scotland. Email: [email protected] We hope to see many families in Congenital Deafblindness in Adults We are planning to have fun! And Network maybe also to learn something Glasgow! Dominique Spriet Foyer d’Accueil Médicalisé Quenehem from each other’s experiences. BP53, Rue du Mont Saint Eloi 62470 Calonne-Ricouart If you would like more Sabine Kersten Tel: +33 - 1 - 0628 501737 Email: [email protected] EDbN Ricard Lopez APSOCECAT & APASCIDE C/ Almeria, 31 ATIC ESP-08014, Barcelona, Spain Usher Study Group Tel: +34-678-712-619 Fax: +34-678-782-600 Email: [email protected] Marylin Kilsby reports: Employment Network Seija Troyano Nakskovinkatu 8 as 9, 78200 Varkaus, Finland Email: [email protected] ollowing on from the highly Interpreters Development Network successful Usher Study Group Mirjam Leusink Past. Petersstraat 68 in Perth, Western Australia, 7462 MT Rijssen, Netherlands F Email: [email protected] we are already making plans for Latin American Network the next Usher Study Group. Sandra Polti Email: [email protected]; We will be hosting the Usher [email protected] section of the Special Interest Day contact between USG meetings Nordic Culture Network Lone Poggioni at the DbI European conference and also keeping up to date with Via G. Deledda, 19 06074 Ellera (PG), Italy in Senigallia, Italy, in September current thinking and research on Telefax: 0039 075 5179 413 Email: [email protected] 2009 and we may hold an USG Usher issues. Rubella Network pre-conference to the same event Get in touch if you would like to Nancy O’Donnell Helen Keller National Center for Deaf-Blind Youths as well. join us. and Adults 141 Middle Neck Road I am looking into starting an USG Sands Point, NY 11050, USA phone:516-944-8900 x326 e-group as a way of remaining in [email protected] fax: 516-944-7302 vp: 516-944-8900 [email protected] Siblings Network Sabine Kersten Koningsbeemdstraat 3 Lommel B 3920, Belgium Tel/Fax: +32 11 53 35 93 Email: [email protected] AdbN Tactile Communication Working Group Bernadette van den Tillaart Acquired Deafblindness Network 15175 Prairie Road, South Solon OH 43153, USA Telefax: +1-740-426-6728 Ges Roulstone Email: bernadettevanden [email protected] he co-ordinating group of Usher Network Carol Brill ADBN met in Oslo on the 147 Meadow Grove, Dundrum, Dublin 16, Eire Email: [email protected]; [email protected] T weekend of 19 – 20 April Usher Syndrome Study Group (USSG) to finalise the programme for the Marylin Kilsby Sense 7th International Seminar, which is stages of life”. The Seminar will South East Regional Office Newplan House, 41 East Street scheduled to take place in Bergen, contain 6 plenary sessions and Epsom, Surrey KT17 1BL Tel: +44 – 845 127 0076 Norway from 8 – 12 October. 20 workshops – an increase on Textphone: +44 – 845 127 0078 Fax: +44 – 845 127 0077 This year the Seminar is entitled previous events. Email: [email protected] “Activity, Ability and Participation, We look forward to welcoming Acquired Deafblindness in all you to Bergen!

32 • DbI Review • January – June 2008 Network News

Rubella Network Nancy O’Donnell

he Rubella Network had its are alive and thriving. Late onset resources. As a first official meeting at the DBI health issues are still a concern group, we need T conference in Perth, Australia, and we need to do a better job of to take a look in September! Our session was figuring out the long term impact at what we can only about an hour long, but it of CRS. Our work continues! do to help. was just enough time to get the At the network meeting, we There were 3 presentations fire going in the group. The room handed out a short survey to on rubella at the conference, was filled with professionals, try and get a better idea of including the very exciting parents and consumers with immunization policies, numbers report by Trees van Nunen CRS from all over the world. The of people with CRS worldwide, and Anneke Schoenmaker of consensus of the group is that information and resources that are the Netherlands who reported we must not let CRS disappear available, and how the network medical and psychological data from global consciousness. can be most helpful. We will of approximately 65 adults with Because the incidence of rubella compile those results and post CRS born before 1985. Joff McGill is slowly decreasing or even them on our webpage http:// of the UK addressed MMR/autism being eliminated in some parts www.deafblindinternational.org/ debate. His full presentation, and of the world (thanks to better standard/network_rubella.html the latest on rubella and CRS will immunization policies), there is a We received a heartfelt request be available on our webpage. tendency to think that rubella no from Africa for support of longer needs to be addressed. But national immunization programs If anyone would like to add as we say in the U.S., rubella may throughout the continent. This is a their name to a list of people be eliminated, but adults with CRS country with many needs and few interested in CRS, please contact me at [email protected]

Communication Network

ovember 8th 2007 was network group is the conference the seminar in early 2009. a special day for the ‘Co-Creating Communication A second topic the network N members of the DbI with Persons with Congenital group is studying can be described network group on communication. Deafblindness’ that will take place as ‘Construction of Language’. At On this day, the students of the from October 8th till October the moment the possibilities to first Master Course received their 11th in Leeds. The conference organize a Paris conference on this diplomas. is organized by Sense UK in subject in 2010 are being explored. This Master Course is provided cooperation with the DbI-network And... last but not least: by entirely by the members of the group. The programme and now booklet 3 in the series network group under the auspices further information about this ‘Communication and congenital of the University of Groningen. conference can be found through deafblindness’ is finished and For the members of the network [email protected]. available at [email protected]. group the realisation of the Master Besides the activities for the In the course of 2008 booklet 4 Course has been a wish for many Master Course and the conference will also become available. During years. The Master Course not in Leeds two other topics are on a course, preceding the European only provides the opportunity the programme in the coming Conference in Italy in 2009, to share knowledge, but also to period. The first is the intention all booklets will be presented, further scientifically underpin the to organize a seminar round including the manner in which work that has been done by the the subject ‘Deafblindness and they can be used for staff training members of the network group. Autism’ in early 2009. This subject activities. In the mean time the second has emerged from a number of Master Course is in full swing workshops in Perth. It is clear Ton Visser and the third, that will start in that this subject requires further Network Group on September, is in preparation. deepening. The network group Communication Another important event for the wants to set the ball rolling with

January – June 2008 • DbI Review •33 Network News

Employment Network

uring the past two years with two students who will become who employ me. I have felt like being a sign language instructors this As my work was D kind of research worker spring. I also tested the technology like a cake with in the field of employment for with interpreters. The experience many slices, there disabled people. I have become was great compared with anything was not a simple a person who wants to see what available before. The needs of solution to who pay my fees so that is happening with the system, deafblind people are very special it provided a living wage. officials, and with people around and deafblind are most definitely During my project I gave a who are involved with your work people who are the first to thirst monthly report of my day-by-day in one way or another. I have for any progress in their daily life. work and plans to my supervisor. also attended to many seminars, And I think deafblindness is surely For example, I do not find it meetings and discussions around something that offers an endless meaningful to have a no job at the topic of employment. field of challenges for development. all, which is not realistic for me. Last year I had a job where I got Last summer I attended a day trip Recently, for example, I received regular pay from a special project. by bus. A group of twenty active a letter from Employment Office It gave me an opportunity to business women had arranged the offering me a job as a school build up my work from different trip. They had sent me an invitation assistant. Although I have the “slices” – schools, newspapers, to join them as a member of our education for that, I know I cannot Parliamentary, with projects in the city council. I had an opportunity work in a busy classroom where deafblind organization and with to learn which kind of business pupils need the kind of help that students, aids and technology! The each of them have. During the trip someone with good hearing and main aim of the special project was we visited some towns where we sight can offer. But I also know I also to help each individual to get heard about new ideas from other can do many things very effectively his or her feet in the door of work, women, visited an art museum, and that there are many area, to see if it works in both sides. had a lunch and coffee. I had a sign too, where my disability is more a My experience was that I had language instructor with me. I also strength than a weakness. a great opportunity to do a very had an opportunity to tell the ladies My problem is simple: I have not meaningful job using my skills and about myself, my needs and how found an employer who requires education with the people I met to do things. The feedback I got what I can offer in the workplace and worked with. The thing I was was that there are many different and is willing to offer a salary for able to offer was my point of view ways to do things, but someone it. A colleague kept on reminding arising from my special needs, without any information has no me that my work is something that professional status and my ability idea of anything like that. After the only I can do. This is a good reason to offer advice and information. trip I found I had got lots of new to remember how individual we This might sound too simple to friends who send me emails, invite are with our knowledge and skills be considered as work, but after me to join their events, share their – and that includes deafblind all there are many quarters where ideas and networking. I also have people. The problems we still face all that information is something now seen their work and products, are problems associated with the that is needed. In fact, important too. They have a lot of energy and system around us. information! It can be a significant enthusiasm for things they do. It is up to deafblind people part of training or education for With students, projects, MPs etc, themselves to fight for a better students, an important information it is similar. They need different future. Who else does this for us? for MPs and important information point of views and feedback. When Let’s stay in touch in the for someone who wants to improve meeting them I always feel I have employment matters. You can new aids and technology. something they need. Just great – contact me seija.troyano@ During my work I met a I’d say! dnainternet.net for a while. I still manufacturer with whom I However, at the end of last year have some problems to start an discussed the possibility of an aid the project was over. To be able egroup but, I am working on it and that had not before been thought of to continue it should have needed will let you know about it as soon as an aid for Deafblind people. The some significant changes – mainly as possible. aid is an expensive one but I had in respect of the different money time to use and test it, free of cost, policy from the different people Seija Troyano

34 • DbI Review • January – June 2008 Leeds conference

Co-Creating Communication with Persons with Congenital Deafblindness Theory and Practice

Wednesday 8th - Saturday 11th October 2008 The Royal Armouries Museum, Leeds, UK The Programme The conference will address four themes

8 October 2008 – Dialogicality – Professor Ivana Markova 9 October 2008 – Joint Attention – Professor Peter Hobson 10 October 2008 – Gestures and Mimetics – Dr Susan Duncan 11 October 2008 – Language – Dr Kari-Anne Selvik MA

We are really excited about the Conference as it will be attended by delegates from all over the world.

We look forward to seeing you in Leeds! Only a few places left!

http://www.sense.org.uk/professionals/ co-creating+communication+conference For further information please contact [email protected]

January – June 2008 • DbI Review •35 Using books with deafblind children

Using books with deafblind children at the CESSA educational centre for deafblind children in Larnay, France

Brigitte Lastere and Ghyslaine Gimene, who are educators, have been working on a programme to encourage deafblind students to enjoy stories!

Having fun with semicircle group. The physical that children have looked at books! positioning of the group can and understood the picture. encourage joint attention We do this to increase joint Usually, books are used by and their attention towards attention and with repetition adults in a teaching situation. the others through visual or/ of the situation children can When children use books, and tactile contact between memorize pictures and the they physically manipulate children. Then we begin. We story. them to produce visual and ask children to remember the sensory sensations, using story we have seen the week them in their own individual Mime before. This is designed to way. Books also have other After that, we change our stimulate their memory. We functions to encourage space. We move to another ask children to repeat our the imagination through room where we mime questions about the story to dreaming and discussion. So scenes of the story. The be sure they have properly we decided to develop an mime is important because understood. activity which employed both it transforms thoughts into these functions to engage action and gives a reality to the children. Time to respond what is imagined. The acting Our aim, in this activity, was Children often need time of the story helps children to help children to mobilize to respond and they need to create mental pictures their cognitive abilities: their to absorb the information of the situation. There is, in attention, memory, language about what is being asked of this room, a decor similar and reasoning. And we also them and integrate it before to that in the picture. This is wanted to encourage them coming up with the answer. designed to help the children to play, because the notion of We create a setting that to mime the story. play is difficult for deafblind avoids anxiety for the child In addition we solicit their children, and playing is very that is contributing. imagination and initiatives important in every child’s After this reminder of the about the story. development. story, we present a new The mime also can help picture of the story to each children to understand a What did we do? child. We question them all picture, to integrate a given about what they saw in the situation and emotions First of all, we have created picture: who is in? What the expressed. As it is not reality, a regular consistent time characters do? Where? What but acting, they can feel and place to do this work. they say? The questions are some distance from the The group of children arrives important for us to be sure emotional state of the story. and they sit on chairs in a

36 • DbI Review • January – June 2008 Using books with deafblindSubhead children here

Co-activity is important people and their functions pictograms or another format for communication and roles. In this way children according to each child’s learn to understand why particular preference and But the children, with adults have certain reactions understanding. In this way sensory impairments, in this situation and, with the children have their own still have difficulty in support, can extend their book of the story, with their communicating. So, adults experiences of the world. drawings and written traces help them to communicate, Drawing the story and of the story included. to stimulate their initiatives, making it personal to support their gestures and After the story mime, movements. As always, co- Making books fun! we move back to the first activity is very important at So in this activity, we try to room. Then, we ask each this time. lead the children towards the child to colour the story’s We have noted an pleasure of books. pictures. The drawings allow interesting fact. With the We stimulate their cognitive the children to integrate mime, children change their functions, their imagination the story in another way place, their role, function. through mime and play, and by allowing them to create At any moment in a story, encourage communicative the pictures that make up they can play an adult, and initiatives. We believe it also the entire story. We finish another time, they play a helps them to understand the by writing a sentence to baby or a student. They have world. summarize the picture, using to pay attention to others

The Foyer Group up-date

This is just a brief update on developments from the Foyer Group established at the Perth Conference …from Sian Tesni Roberts

irstly, I would like to local organizations could of the Convention, see http:// convey my heartfelt work together in developing www.un.org/esa/socdev/ F condolences to the a coherent structure of enable friends and family of Mike funding and training. Since then, some Collins. At the same time Akhil Paul gave the group communication has taken as we mourn his death we a kick to communication, place. Let’s hope that this can also celebrate all he by providing up to date gets us all going again. If has left through his vision information on the you have any stories, ideas and his dedication to work ratification of the Convention or any other news about in developing services to on the Rights of Persons educational development, people who are Deafblind in with Disabilities, informing health issues, advocacy, many countries throughout everyone that India and policy developments, the world. He was deeply Gabon (Africa) ratified on work and employment or concerned about training and 1 October the Convention technological advances to the continued development on the Rights of Persons exchange, please contact of services, particularly in with Disabilities, bringing Sian Tesni from CBM who will countries of the South. In the number of ratifications add your name to the list of our meeting in Perth at the to seven (in October 2007). contributors and share your founding of the Foyer Group, The information sent was information with the group – he was particularly interested interesting and informative. sian.t.roberts@btinternet. in how international and For updated information on com signatures and ratifications

January – June 2008 • DbI Review •37 SubheadCommunication here booklet

“Meaning Making”

The third booklet of “Communication and congenital deafblindness” is ready!

his booklet is a co-production DVD and its use of writers from Denmark, There is a DVD enclosed, together T Finland, France, Norway, with guidelines for watching Sweden and the Netherlands and the video material. It illustrates is edited by Jacques Souriau, Inger the essential concepts from this Rødbroe and Marleen Janssen. booklet.

What is “Meaning Making” Additional titles in this about? series “Meaning Making” is the Congenital Deafblindness third out of four booklets on and the Core Principles of Congenital Deafblindness and Intervention Communication, which are written to inspire families and Contact and Social Interaction professionals communicating with deafblind children and adults. The The final booklet,Transition to way human beings understand the Cultural Language, is due out the world is an essential issue next year for seeing/hearing partners of congenital deafblind persons. To order a copy of this new Because of their dual sensory loss, booklet or any of the others partners of deafblind persons deafblind persons experience the please turn to the website of can use this knowledge in their world first and foremost bodily, Viataal: intervention strategies. which challenges seeing/hearing [email protected] partners when they try to take In the third chapter two different the perspective of their deafblind but supplementary theories are partner, when experiencing the described, clarifying the processes These booklets are the result world together, and when they of meaning making. Katherine of an international project communicate about shared Nelson’s model on Mental Event executed by The Danish experiences. Representation and a model from Knowledge Centre on cognitive semiotics are described Congenital Deafblindness What does it contain? as supplementary tools. The fourth (VCDBF) (Denmark), Viataal chapter addresses negotiations, (the Netherlands), NUD The first chapter addresses how which is the pragmatic (Denmark). gestures emerge from bodily phenomenon happening in emotional experiences in the dialogues between partners, when This was made possible by world. The experiences that leave meaning is co-created and shared. financial support of these traces in the body and the mind of The last chapter addresses the centres mentioned and a deafblind of person, often appear exposure to cultural language in by Revalidatiefonds (the as bodily gestures referring to the case of deafblindness. The Netherlands) and three significant aspects of an event. specific challenges we meet in Danish funds: Det Obelske The second chapter focuses on tactile communication, when familiefond, Oticon Fonden narratives. The dynamic narrative we are trying to introduce and Det kommunale form is essential for meaning linguistic elements, are addressed Momsfond. making in all human beings. In theoretically and practically. this chapter we will address how

38 • DbI Review • January – June 2008 ICEVI – Global campaign

Education for all children with Visual Impairment (EFA-VI)

Larry Campbell, President of ICEVI, describes the “Education for All” initiative which seeks equality of opportunity for every child with vision impairment, including those who are deafblind or have additional needs.

or much of its 56 year history intentions” and that without global EFA campaign of UNICEF, the International Council on specific strategies and the UNESCO and The World Bank F Education of People with collaboration of our colleagues at and therefore is working directly Visual Impairment (ICEVI) focused DbI children with deafblindness are with governments that have most of its attention on the likely to remain marginalized. developed a national EFA plan. exchange of information on “best For this reason ICEVI is now in 3. The blind community through practice” to improve the quality discussions with DbI on how we its international organization, the of education for those children can work together more closely to World Blind Union, has been fully already in school. In 2002, ICEVI assure that the goal of “education involved from the outset in the engaged in a strategic planning equity for every child” includes planning, and now, the execution effort that resulted in greater children with deafblindness. of the campaign. focus on the needs of the 4.4 At this point I can almost hear million children in the developing the questions rumbling around in 4. Today the Convention on the world who are without access to your head. Rights of Persons with Disabilities education. What makes ICEVI and WBU think has been ratified and is a Three years of serious planning that this goal is achievable when powerful tool in our hands to followed and in July, 2006 ICEVI, in for so long the vast majority of pressure governments to meet partnership with the World Blind children in the developing world their legal obligations to provide Union (WBU), launched the Global have been denied access to an education for every child. Campaign on Education for All education? While the road ahead will surely Children with Visual Impairment That is certainly a fair question. have its twists and turns, initial (EFA-VI). While this campaign carries with results show promise. In less The goal of the EFA-VI it no “gold plated guarantees” we than 2 years national plans have Global Campaign is simple and feel that today there are a number been developed and activated straightforward; to provide of important factors working in our in 6 countries with several more educational equity to every child favor. Let me illustrate with four scheduled to come online in with a visual impairment no matter examples: within the next 6 to 12 months. where s/he lives in this world. How 1. While the EFA-VI Global Our Phase I (2006-2010) goal of we measure ourselves against that Campaign is led by ICEVI, it is reaching at least 14 countries goal is equally straightforward: 1. a program that belongs to the seems achievable. We believe the Have enrollment rates increased? entire community. Today 11 momentum and success of Phase I 2. Have drop-out rates decreased?, international non-government efforts will bring meaning to that 3. Are the children receiving the organizations along with UNICEF, old expression “nothing succeeds support services they need? and UNESCO and The World Bank like success”. 4. Are children performing on par are actively involved. For the It is our intention to regularly with their sighted classmates? first time ever the international update members of DbI on the The goal of the EFA-VI Global community is planning and EFA-VI Global Campaign, and more Campaign is to reach ALL children working together on a mutually importantly, to actively engage DbI with a visual impairment including developed program with a and its members in helping us to those with additional disabilities shared common goal. assure that the campaign reaches including deafblindenss. However, 2. The campaign is being carried ALL children including those with ICEVI is acutely aware that “the out within the framework of the deafblindness. road to hell is paved with good

January – June 2008 • DbI Review •39 Working with World Federation of the Deafblind

DbI signs a Memorandum of Understanding

with the World Federation of the Deafblind

he Presidents of DbI The agreement commits other on a regular basis and WFDB met at the two organisations to: to forge closer working T the EDBU General relationships and mutual Assembly in Zagreb, l Actively share information understanding

Croatia on 26 April to sign on a regular basis and l Work collaboratively on a historic memorandum of submit annual reports to campaigning issues and understanding between their each others Councils policy development two organisations. l Actively spread knowledge l Create links to each others The agreement recognises and information on each websites that, “although we are two others organisations and l Offer each other standing separate organisations with promote understanding of agenda items at each two distinct identities, by their work others Council meetings the strength of our common l Ensure the Presidents of l Co-ordinate respective endeavours we achieve more the two organisations events to avoid clashes in than we achieve alone”. communicate with each the calendar

l Offer standing invitation to each others Presidents to attend their conferences and events.

Speaking at the signing ceremony both Lex and William praised the work of their separate organisations and looked forward to a mutually beneficial partnership.

Ges Roulstone

40 • DbI Review • January – June 2008 Secretariat and ManagementSubhead News here

last September, we have now through limited funds and other made significant process in taking available resources. forward the implementing process. A plan for its implementation Next Management is now discussed and approved Committee Meeting by the Council members. DbI is The next meeting of DbI currently focussing on 4 priority Management Committee and strategic areas: Information, Council will be held from 15 -17 Advocacy, Networks and September, in Wurzburg, Germany Membership. Group leaders For more news and details on Dear readers, have been identified and groups the meetings you may contact the I hope you enjoyed this copy of the are being formed for each of Secretariat. magazine. DbI is keen to interact these areas. Your participation is with its members, engage through extremely vital to this process. various joint activities and stay DbI Council is also keen to European Conference vibrant in your regions, cities and ensure that the groups responsible Information for DbI European organisations. It draws its strength to implement the plans receive Conference to be held in Italy in and dynamism from your valuable adequate development and September 2009 is included in association and contributions. monitoring support. Upon their your copy. More details about the advice, a new member of the conference can be found in the Change is on its way ManCom will be taking up this DbI website. The local hosts are This is the last time that I will be responsibility. Whilst each of the taking all efforts to make this an signing off from this page as your groups will look at generating enjoyable experience for you. And Secretary. DbI has received very income to make their activities the Scientific committee members professional and competitive bids sustainable, DbI is also committed are putting together a programme to run the new Secretariat and take to support these initiatives that promises to be interesting and up the role as your Secretary. By the time you are reading this copy, Below: Scottish hospitality! the new Secretariat would have been announced. Thank you very much for all the support that you have given me and my colleagues, Parag and Shiv at the Secretariat. Our relationship with DbI has been an extremely satisfying one and will remain as a pleasant memory. Not in this role, but we look forward to our continued association with DbI in future. We also hope that you will continue to extend your support and encouragement to our colleagues at the new Secretariat.

Mancom and Council in Glasgow I am very happy to share with you some updates from the DbI Management Committee and Council meetings were held respectively on 22 February and 23-24 February, at Glasgow, Scotland. Following the adoption of the new DbI strategy at Australia,

January – June 2008 • DbI Review •41 SubheadSecretariat here and Management News inspiring. Please register for the We also hope that you as a corporate member, please pass conference now! “ on their details to the Secretariat DbI continues to depend on will continue to extend now! the kind support of its members If you have any queries regarding and we remain extremely grateful your support and the status of your membership, to all members for their ongoing please do not hesitate to contact contribution to the organisation. encouragement to our the Secretariat. We very much hope that you will be We hope that you received your able to make a similar contribution colleagues at the new copy of the previous issue of DbI this year and if you were able Secretariat. Review (issue # 40). If you have to increase this slightly we will ” not received your copy, please be happy to send you a revised contact the Secretariat. to quote your DbI Membership invoice. As ever this would make an We are also keen to update Number. enormous difference for DbI. the information we have about Secretariat has initiated you and your organisation, so the process for membership Mini Corporate kindly make sure you fill the renewals by sending invoice to Membership online renewal form. If you find all its members. The members DbI is very pleased to announce any difficulty in making an online are encouraged to renew their a new band of Corporate payment, please get in touch with membership. Individual members Membership from the current the Secretariat, right away. can now only pay for a four year year. Mini Corporate membership If you have any queries regarding period. is available at a reduced fee your current membership or would Members, please note that of 100 to 250 Euros annually like to complete the membership the credit card payment facility to organisations working in form via email, please contact continues to be used by a developing countries (as defined Sumitra Mishra/ Parag Namdeo at: majority of our members. Please by the World Bank http:// secretariat@deafblindinternational. visit our website to renew your go.worldbank.org/K2CKM78CC0). org or post your query at: DbI membership. You can fill the It will be extremely helpful if you Secretariat, Post Box No: 9601, renewal form at http://www. could share this information to Janakpuri, New Delhi – 110058, deafblindinternational.org/ your contacts as widely as possible, India. standard/c_membership.asp and and encourage them to become choose suitable option to make DbI members and avail all benefits. Sumitra Mishra your payment. In case you wish If you know of any organisation DbI Secretary to pay by bank transfer you need that may be interested to join DbI

DbI is a vital network for all involved in the field of Non-voting membership costs d30 a year or a discounted deafblindness. In order to best serve our members, it d100 for four years. is crucial that we raise sufficient funds through fees to Voting Members are the representatives of corporate finance our basic activities. With this in mind, there is members who have paid their subscription fees, and the a Corporate as well as an Individual membership form representatives of recognised DbI networks. for you to fill in. Please encourage as many people as possible to join. There are now three tiers of Corporate Membership: Non-Voting Members consist of individuals, national Large Corporates: networks and non-subscribing Corporates. Non-voting Annual Fees between d3,000 and d5,000 members can contribute to the decision making Small Corporates: process of DbI through either a corporate member or Annual Fees between d300 and d1,500 an international network. Non-voting members will Mini Corporates receive a copy of DbI Review and other relevant DbI Annual Fees between d100 and d250 information. Corporate Members can be nominated to sit on the Council.

42 • DbI Review • January – June 2008 Membership

Deafblind International Individual Membership I would like to join DbI as an individual member I would like to renew my DbI individual membership Member details Membership No. Title Surname First name Organisation Job Title Address (Line 1) Corporate Membership Address (Line 2) There are three tiers of Corporate Membership: Town/City State/County Large corporates Annual fees between d3,000 and d5,000 Zip/Post Code Country Small corporates Annual fees between d300 and d1,500 Telephone no. Fax no. Mini corporates Annual fees between d100 and d250 (Please include country and area codes) We would like to join DbI as a Large / Small / Mini E-mail address: Corporate Member (please delete as appropriate) Are you: a deafblind person a family member a professional We submit an annual fee of d Does your organisation work primarily for/with: Corporate members are entitled to receive 25 / 10 / 5 copies blind people deaf people deafblind people of DbI Review. We would like­______copies in English disabled people other (please specify) (delete as appropriate) Member Details: Your contact details will be made available to DbI members Organisation for DbI purposes but will not be made available for commercial purposes. Representative DbI Review (please check one box in each category) Address (Line 1) A. I would prefer to receive DbI Review in: Address (Line 2) English B. I would prefer to receive DbI Review on: paper disk* Town/City State/County (The disk version of DbI Review is supplied in text only format, on floppy disk) Zip/Post Code Country Membership Fee please tick where appropriate Tel: I wish to pay an annual membership fee of d30 (please include country & area codes) I wish to pay for 4 years’ membership at the discounted rate of d100 Fax: Please waive my membership fee as I am unable to pay it (please include country & area codes) at present. Please contact me. Email:

How to pay? In order to enable us to put your entire membership fee to use, we would kindly ask you to avoid sending us cheques as far as possible. By arranging your fee via bank transfer, we are able to keep banking charges to a minimum, thereby increasing the value of your membership fee. Naturally, for those of you who do not have access to this facility, we will be delighted to accept your fee by credit card, cheque or in cash. However, if it is really not possible for you to pay by bank transfer and you do have to pay by cheque or credit card, maybe you could do so for four years instead of just the one. Payment method Bank Transfer Credit Card Cheque B) Payment by Credit Card A) Payment by Bank Transfer Card type: VISA American Express Mastercard If paying by bank transfer, please make payment to the Card no: following account: Name of Bank: RABOBANK Expiry date Name on card: Address of Bank: Sint-Michielsgestel, The Netherlands Please note that credit card payments are made to Sense who Account Name: Instituut voor Doven: INZAKE DBI then credit DbI. Account Number: 11.29.09.825 C) Payment by cheque Swift Address: RABONL2U IBAN: NL31 RABO 0112 9098 25 If paying by cheque, please make cheques payable to ‘Deafblind International’ and send to the address given below. Date of Bank Transfer: If paying by Eurocheque, please make out cheque in euros. Please quote the Swift Address and IBAN number in your instructions for Bank Transfer (If this is impossible and you Please fax this whole page to 91-11-25618430 or return to: have to send a cheque or international postal order then please The Secretariat, Deafblind International, Post Box No 9601, contact us) Janakpuri, New Delhi – 110058, INDIA.

January – June 2008 • DbI Review •43 The World Association Small Corporate Members AUSTRALIA Marianne Disch NORWAY Promoting Services Celestine Hare Nordic Staff Training Centre for Evabritt Andreassen Able Australia Deafblind Services Regional Resource Centre for for Deafblind People Tel: +61 - 3 - 9882 7055 Tel: +45 – 96 – 47 16 00 Deafblind/VKS Fax: +61 - 3 - 9882 9210 Fax: +45 – 96 – 47 16 16 Tel: 0047 - 55 - 92 34 85 Email: Celestine.hare@ Email: [email protected]; Fax: 0047 - 55 - 92 34 91 ableaustralia.au; [email protected] Email: evabritt.andreassen@ Honorary Officers [email protected] Preben Gundersen statped.no President Akhil Paul Treasurer Alan Baynham Dovblindcentret Tonhild Strand Hauge William Green Sense International (India) Ton Visser Royal Institute for Deaf and Tel: +45 - 99 - 31 89 00 Skadalen Resource Centre Lega del Filo D’Oro 405, Favourite Residency Viataal Blind Children Fax: +45 - 99 - 14 73 44 Tel: +47 - 22 - 703 702 Via Montecerno 1 Opp. St. Xavier’s Loyola Hall Theerestraat 42 Tel: +61 - 2 - 9871 1233 Email: [email protected]; prgu@ Fax: +47 - 22 - 703 715 60027 Osimo (AN) Memnagar, Ahmedabad- 380 052 5271 GD Sint-Michielsgestel Fax: +61 - 2 - 9871 12196 dbc.nja.dk Email: tonhild.s.hauge@ ITALY Gujarat, INDIA The Netherlands Email: [email protected] Vibeke Faurholt statped.no Tel: +39 -071 – 72451 Tel: +91- 79 – 2791 0792 Tel: +31 - 73 - 55 88 111 John Finch Danish Parents Association Knut Johansen Fax: +39 – 071 – 717102 Fax: +91 - 79 – 2791 1054 Fax: +31 - 73 - 55 88 994 Australian DeafBlind Council Graeswangen 4 Andebu Døvblindesenter Email: [email protected] Email: [email protected] Email: [email protected] (ADBC) 9330 Dronninglund Tel: +47 - 33 - 438700 Vice-Presidents Secretary Finance Office: Tel: +61 -04 - 2743 5243 Tel: +45 -98 -854 332 Fax: +47 - 33 - 438720 Bernadette Kappen Sumitra Mishra Viataal Fax: +61 - 3 - 9882 9210 Fax: +45 -45 -859 969 Email:[email protected] The New York Institute for Special Sense International (India) Information Officer: Email: [email protected] Ole Mortensen [email protected] Education B2/95, Ground Floor Eileen Boothroyd, Sense [email protected] Information Centre for Acquired Anne Lise Hoydahl 999 Pelham Pkwy Janakpuri, New Delhi - 110058 Email: Eileen.boothroyd@sense. Debbie Karasinski Deafblindness AKS(Andebu Kompetanse- & Bronx, NY 10469 INDIA org.uk Senses Foundation Inc Tel: +45 4439 1175 Skolesenter) USA Telfax: +91 – 11 – 25618430 Tel: +61 - 8 - 9473 5400 Fax: +45 4439 1179 Tel: +47 33438674 Tel: (718) 519-7000 Email: [email protected] Fax: +61 - 8 - 9473 5499 Email: [email protected]; oem@ Email: anne.lise.hoydahl@ Email: [email protected] Email: [email protected] dbcent.dk signo.no [email protected] Else Marie Jensen Roar Meland AUSTRIA Center for Deaf Eikholt Christa Heinemann Tel: 0045 86 20 45 00 Tel: +47 32889050 Large Corporate Members Osterr. Hilfswerk fur Taubblinde Fax: 0045 86 20 45 01 Fax: +47 32889052 Tel: +43 - 1 - 602 0812 0 Email: [email protected] Email: [email protected] FRANCE NETHERLANDS SWEDEN Fax: +43 - 1 - 602 0812 17 FINLAND SINGAPORE Jean-Marc Cluet Ton Visser Sergei Sorokin Email: c.heinemann@zentrale. Heikki Majava Koh Poh Kwang French Deafblind Consortium Viataal Resurscenter Mo Gard oehtb.at The Finnish Deafblind Singapore School for the Tel: +33 - 1 - 4627 4810 Tel: +31 - 73 - 55 88 111 Tel: +46 - 122 - 23600 ARGENTINA Association Visually Handicapped Fax: +33 - 1 - 4627 5931 Fax: +31 - 73 - 55 88 994 Fax: +46 - 122 - 23690 Graciela Ferioli Tel: +358 - 9 - 54 95 350 Tel: +65 - 2503755 Email: [email protected] Email: [email protected] Email: [email protected] Hilton/Perkins Program - Latin Fax: +358 - 9 - 54 95 35 17 Fax: +65 - 2505348 GERMANY SCOTLAND UK America Email:heikki.Majava@kuurosokeat. Email: kohpohkwang@ssvh. Wolfgang Angermann Gillian Morbey Tony Best Tel: +54 351 4234741 fi edu.sg German Deafblind Consortium Sense Scotland Sense Fax: +54 351 4234741 GERMANY SPAIN Tel: +49 - 511 - 510080 Tel: +0141-564-2444 Tel: +44 - 20 - 7272 7774 Email: [email protected] Eberhard Fuchs Dolores Romero Chacon Fax: +49 - 511 - 5100857 Fax: +0141-564-2443 Fax: +44 - 20 - 7272 6012 BELGIUM Blindeninstitut APASCIDE Email: w.angermann@ Email: gmorbey@sensescotland. Email: [email protected] Marlene Daelman Tel: +49 9312092119 Tel: +34 - 91 - 733 52 08 taubblindenwerk.de org.uk USA MPI Spermalie Fax: +49 93120921233 Telefax: +34 - 91 - 733 40 17 Monika Brenes SPAIN Barbara Mason Tel: +32 - 50 - 340 341 Email: [email protected] Email: [email protected] CBM Pilar Gomez Perkins School for the Blind Fax: +32 - 50 - 337 306 GREECE SWEDEN Tel: +49 - 6251 - 131 320 ONCE Tel: +1 - 617 - 972 7502 Email: Marlene.daelman@mpi- Diamanto - Taula Masta Sven Sjoberg Fax: +49 - 6251 - 131 165 Tel: +34 - 91-353 5637 Fax: +1 - 617 - 972 7354 spermalie.be Hellenic Association of Deafblind Association of the Swedish Email: [email protected] Fax: +34 - 91-350 7972 Email: Barbara.Mason@ BRAZIL Telefax: 30-210-440689 Deafblind (FSDB) Email: [email protected] Perkins.org ITALY Maria Aparecida Cormedi Email: [email protected] Tel: +46 - 8 - 399000 Rossano Bartoli Jackie Brennan ADEFAV IRELAND Fax: +46 - 8 - 6595042 Lega del Filo dÕOro Overbrook School for the Blind Tel : 55(11) 62150794 Finola Loughney Email: [email protected]; fsdb@ Tel: +39 - 071 - 72451 Tel: +1 - 215 - 877 0313 Fax: 55(11) 22739333 The Anne Sullivan Centre fsdb.org Fax: +39 - 071 – 717102 Fax: +1 - 215 - 877 2466 Email: [email protected] Tel:+353-1-289 8339 Egle Ohman Email: [email protected] Email: [email protected] Shirley Rodrigues Maia Fax:+353-1-289 8408 A Regional Team for Grupo Brasil Email: annesullivancentre@ rehabilitation for people with Tel: 55(11)55790032 eircom.net Deafblindness Fax: 55(11)55795438 Tel: +4631999970 INDIA Fax: +4631999974 Networks Email: grupobrasil@grupobrazil. U.T. Rao org.br Email: dovblindteamet@ Acquired Deafblindness EDbN Siblings Network Sense International (India) vgregion.se; egle.ohman@ Network Ricard Lopez Sabine Kersten CANADA Tel: +91- 79 – 2791 0792 vgregion.se Roxana Spruyt-Rocks Fax: +91 - 79 – 2791 1054 Ges Roulstone APSOCECAT & APASCIDE Koningsbeemdstraat 3 Anna Lena Steenson Sense East C/ Almeria, 31 ATIC Lommel B 3920 DeafBlind Ontario Services Email: [email protected]; Tel: +1-905-853-2862 Specialpedagogiska institutet 72, Church Street, Market ESP-08014, Barcelona, Spain Belgium Bhushan Punani Tel: +46-15852300 Deeping, Tel: +34-678-712-619 Tel/Fax: +32 11 53 35 93 Fax: +1-905-853-3407 Blind People Association Email: execasst@deafblindontario. Fax: +46-15852317 Peterborough, Lincolnshire Fax: +34-678-782-600 Email: [email protected] Tel: +91 - 79 - 630 3346 Email: [email protected] com Fax: +91 - 79 - 630 0106 PE68AL Email: [email protected] Tactile Communication LenaHammarstedt Stan Munroe Email: [email protected] Tel: +01778-344-921 Employment Network Working Group Nationellt Kunskapscenter for Canadian Deafblind and Rubella Fax: +01778-380-078 Seija Troyano Bernadette van den Tillaart Gopal Krishna Agrawal dovblindfragor Association Email: ges.roulstone@sense. Nakskovinkatu 8 as 9 15175 Prairie Road Shikshit Yuva Sewa Samiti Tel: +46 87535940, Tel: +1 - 519 - 372 0887 org.uk 78200 Varkaus South Solon Tel:+91-05542-242280 +46738030808 Fax: +1 - 519 - 372 0312 CHARGE Network Finland OH 43153, USA Email: [email protected] Email: lena.hammarstedt@ Email: [email protected] David Brown Email: seija.troyano@ Telefax: +1-740-426-6728 ICELAND mogard.se California Deaf-Blind Services, dnainternet.net Email: bernadettevanden Joan Brintnell Thorey Olafsdottir The Lions McInnes House - Group SWITZERLAND San Francisco State University, Interpreters [email protected] Deafblind Association of Iceland Barbara Bettenman 1600 Holloway Avenue, Home for Deafblind Persons Tel: 354-5536611, 354-6981098 Development Network Usher Network Tel: +1-519-752 6450 Schweizerische Stiftung für San Francisco, CA 94132-4201, Mirjam Leusink Carol Brill Fax: 354-525-0001 Taubblinde, Heim Tanne USA Fax: +1-519-752 9049 [email protected] Past. Petersstraat 68 147 Meadow Grove [email protected] Tel: +41 - 1 - 714 71 00 Tel: +1-415-239-8089 7462 MT Rijssen Dundrum, Dublin 16 Fax: +41 - 1 - 714 71 10 Jane Sayer KENYA Fax: +1-415-239-0106 Netherlands Eire Email: barbara.bettenmann@ Resource Centre for Manitobans Geoffrey Atieli Email: [email protected] Email: [email protected] Email: ushernetwork@eircom. tanne.ch who are Deaf-Blind (RCMDB) Sense International Communication net; [email protected] Latin American Tel: + 1 204 284 2531 Tel: 254 - 722 - 245861 Catherine Woodtli Network Network Usher Study Group Fax: + 1 204 477 1390 Fax: (00254)- 20 - 782597 SZB Taubblinden- und Ton Visser Sandra Polti Marylin Kilsby Email:[email protected] Email: [email protected] Hörsehbehinderten-Beratung Theerestraat 42 Email: Sandrapolti@yahoo. Sense NETHERLANDS (Rehabilitation) 5271 GD Sint-Michielsgestel CHINA com.ar; South East Regional Office Bernard de Vries Tel:+ 41 (0) 41 228 62 23 The Netherlands Maureen Tan [email protected] Newplan House Visio Fax:+ 41 (0) 41 228 62 25 Tel: +31 - 73 - 55 88 111 Hong Kong Society for the Blind 41 East Street, Epsom Tel: +31 – 55 – 5800695 Email: [email protected] Fax: +31 - 73 - 55 88 994 Rubella Network Tel: (852) 2778 8088 Surrey KT17 1BL Fax: +31 – 55 – 5800890 UNITED KINGDOM Email: [email protected] Nancy O’Donnell Fax: (852) 2777 6559 Helen Keller National Center for Tel: +44 (0) 1372 840300 E-mail: [email protected] Email: [email protected] Alan Avis Congenital Deaf-Blind Youths ad Adults Textphone: +44 (0) 1372 840329 Marlies Raemaekers Sense South East Deafblindness in Fax: +44 (0) 1372 739683 DENMARK Bartimeus Tel: +44 0845 127 0076 141 Middle neck Road Inger Rodbroe Adults Network Sands Point , NY 11050, USA Email: Marylin.Kilsby@sense. Tel:+31-343-526650 Fax: +44 0845 127 0077 Dominique Spriet org.uk The Danish Resource Centre on Fax:+31-343-526798 Email: [email protected] phone:516-944-8900 x326 congenital deafblindness Foyer d’Accueil Médicalisé fax: 516-944-7302 Email: [email protected] VENEZUELA “Quenehem” Tel: +45 4193 2465 vp: 516-944-8900 Pieter Hermsen Maria Luz Neri de Troconis BP53, Rue du Mont Saint Eloi E-mail: [email protected] [email protected] Kalorama SOCIEVEN, Sordociegos de 62470 Calonne-Ricouart, France Tel:+3124 684 77 77 Venezuela, Asociacion Civil Tel: 06.28.50.17.37 Fax:+31024 684 77 88 Tel: +58 212 9911037 Email: [email protected] Email: [email protected]; Fax: +58 212 9911725 [email protected] Email: [email protected]; [email protected]

44 • DbI Review • January – June 2008