Number 38 • July -December 2006

Sharing ideas eafblind International was formerly known Das the International Association for the Education of Deafblind People. A message from the DbI Review appears twice yearly, the two editions are dated January-June and July- president December. The editor will be pleased to receive articles, Dear friends and news items, letters, notices of books and colleagues! information on forthcoming events, such as Once again we have been conferences and courses, concerning deafblind very busy as an organisation. children, young adults and older people. We held our Council meeting Photographs and drawings are welcome; they will be copied and returned. in Kuala Lumpur this summer which was very well attended All written material should be in the English language and may be edited before publication. and gave us the opportunity It should be sent for publication to arrive by the to put on the date below. agenda of the ICEVI world Opinions expressed in articles are those of conference. the author and should not be understood as Our Canadian colleagues representing the view of DbI. hosted a fantastic conference DbI Review is also available on disk. If you are in September which somewhere in the world interested in receiving your copy on disk, please brought many parents and concerning deafblindness. I contact: professional together from all warmly congratulate you all! DbI Secretariat over the country. Your Mancom met last Post Box 9601 The European Deafblind month where many current Janakpuri Network in October brought issues were discussed. High New Delhi – 110058 India families together in Salou, on the agenda was the work Spain to discuss issues of being done by the Strategic [email protected] Fax: 91 – 11 – 25618430 great importance to both Planning Committee and the professionals and parents. Nominations Committee. This This meeting was extremely work will affect the future well organised, thanks to direction of DbI. We cannot Ricard Lopez, and his team be effective unless they have of volunteers, who made your comments so please Editor Eileen Boothroyd this event happen. Plans take the time to put your Design are underway for the next views forward, as both these Geoff Dunn conference to take place in groups are very keen to hear Distribution and DbI Membership Scotland in two years time. from you. DbI Secretariat In November another of Collaboration is the key DbI Website our very active networks, word for DbI and after our Eileen Boothroyd and The Secretariat the Acquired Deafblindness successful link with ICEVI we Editorial Office Sense Network, organised a really are now making an effort 11–13 Clifton Terrace good conference in the to finalise the structure of London N4 3SR north of Holland. And in working with the World United Kingdom December a small group of Federation of the Deaf Blind. Tel: +44. (020) 7272 7774 Fax: +44 (020) 7272 6012 people will meet in Italy to On a final note, but of Email: [email protected] discuss the ageing process of great importance, is the DbI http://www.deafblindinternational.org congenitally deafblind people World Conference coming up and people with acquired next year in Perth, Australia. Cover: Delegates at the ADbN meeting in Groningen. deafblindness. Those involved are working What is so satisfying is very hard to make this an that we have “happenings” unforgettable experience. practically every month I hope you will be taking

LAST COPY DATE FOR THE NEXT EDITION: 10 April 2007

2 • DbI Review • JULY – DECEMBER 2006 advantage of the extended strive to ensure a good CONTENTS deadlines for submitting a quality life for all deafblind A Message from the President page 2 paper and registering your children and adults and their Editorial and Contents page 3 interest! I hope to see many families. Articles of you there. Embodied Cognition and the Development… I finish, as always, with William. Kathleen Deasy & Fiona Lyddy pages 4-7 thanks to all of you who Creating a federation of deafblind people in Africa Lex Grandia pages 8-9 20 times more elderly people with a vision and loss EDITORIAL Ole E. Mortensen pages 10-15 Welcome to School We have a very full magazine campaigning and providing Patti V. Jones pages 16-18 this time – so thank you for services for elderly people the The Forgotten Senses – Proprioception keeping me up to date with material in this article will be David Brown pages 20-24 all your news and views! We most rewarding. Working in Clay have out usual mix of articles, Another area which is very Mary Guest page 25 network reports, regional and current is access to cochlear Romania Education Programme country news and plenty of implantation. Milon Potmesil Cristiana Salomie pages 40-41 photographs to illustrate our describes some of the issues Stickler Syndrome pages 42-43 activities. faced in Czech Republic by International Program Models We lead on a very children with multi-disability. for siblings of children… stimulating article in William has already Sheri B. Moore pages 44-46 which Kathleen Deasy and mentioned the many Khyran treads the Boards Fiona Lyddy from Ireland successful meetings DbI Keith Park pages 48-50 discuss the embodied networks have organised Multi-handicapped children – Users… cognition approach to the in the past three months Milon Potmesil pages 56-59 acquisition of language and you will find them all Opening doors to “Person Centred” and communication skills reported here, as well as communication in relation to people with many others too. Seija Troyano and Tiina congenital deafblindness. Next time we will be Latva-Aijo-Kortelainen pages 60-61 We also have the first of a running the full story from Network News pages 26-35 series of articles on the theme the UN – a major landmark or of the “forgotten” senses. us all! Regional News David Brown begins by Siblings are featured across Australia page 51-52 talking about proprioception, the magazine with a highly Norway page 53 which rarely seems to be informative article from Sheri Argentina page 54 mentioned when children Moore and an account of the Canada page 54 are assessed but has such an Siblings Network meeting in Venezuela page 55 important part to play in the Spain. As part of the article Nepal page 55 way we understand them. there is a comprehensive Conferences and Courses The concept of multi-sensory list of resources, mentioned 6th EBU Deafblind Conference page 37 impairment is brought more briefly here, but lodged in full Winnepeg Conference pages 38-39 clearly into focus through this on the website. Do look and article. download it. University of Groningen Masters Programme page 63 A fine survey article Do let me know if you Perth Conference page 19 addressing the numbers would like to publish an of elderly people who are article or tell us about your Secretariat and Membership News deafblind is presented by work – I look forward to DbI Strategic Review page 62 Ole Mortensen. For those hearing from you. Nominations Committee page 62 member organisations Secretariat Report page 66 that are moving towards Eileen Membership form page 67

JULY – DECEMBER 2006 • DbI Review •3 Embodied Cognition

Embodied Cognition and the Development of Language for Individuals who are Congenitally Deafblind

Kathleen Deasy & Fiona Lyddy Department of Psychology, National University of Ireland, Maynooth.

ndividuals who are the driving force for cognitive It is this consideration congenitally deafblind are development. Thereby, of the manner in which Ipresented with significant “cognition depends on the the body interacts with challenges when attempting kinds of experience that the environment and to acquire language and come from having a body the resultant cognitive communication skills. Since with particular perceptual adaptations that develop most of the information and motor capacities that that may contribute to our perceived is gained through are inseparably linked and understanding of language direct bodily contact, that together form the development for individuals matrix within which memory, who are deafblind. The The embodied cognition emotion, language, and perceptual and motor “ all other aspects of life capacities that develop for approach… may offer some are meshed” (Thelen et al, those who are deafblind 2001, pg.1). According to will reflect the restrictions insights into the way individuals such views, higher order of vision and hearing cognition has its basis in impairment from birth. (Here, who are congenitally deafblind sensorimotor processing reference will be made to develop language. and “the very structure of those individuals who are ” reason itself comes from the congenitally deafblind as details of our embodiment” opposed to those who have cognitive processes necessary (Lakoff & Johnson, 1999, acquired deafblindness. for language development p.4). The suggestion is Although there are difficulties remain closely connected not that concepts depend inherent in developing to the body’s interaction on specific physical communication skills for both with the environment. capabilities; individuals populations, the particular The embodied cognition who are differently-abled challenges that face those approach, with its focus on would not be predicted to who are born both visually specific body-environment possess markedly divergent and hearing impaired are interactions, may offer concepts, nor is conceptual arguably more complex.) some insights into the development limited to Embodied cognition as way individuals who are direct experience or activity. an approach to the study congenitally deafblind Rather, the approach of the mind is associated develop language. argues that to understand with the following six The embodied cognition the human mind we must claims, according to Wilson approach within cognitive consider its place in a body (2002). This first claim is psychology highlights the that interacts with a world. that cognition is situated. association between an Sensorimotor experience and Cognition occurs in a real individual and the particular the recruitment of bodily world environment, with way that individual’s body resources for cognitive perception and action acts upon an environment as processing are key. intrinsic components of

4 • DbI Review • JULY – DECEMBER 2006 Embodied Cognition

this processing. The second Combined vision and situation. David Goode’s claim is that cognition is hearing impairments severely (1994, pg.119) sociological time-pressured. Cognition as constrain interactions with research of two congenitally real-time interaction with the the environment. While loss deafblind children describes environment is emphasised. of one or other of these the phenomenon of a The third claim is that we senses need not preclude type of ‘language’ called off-load cognitive work onto alternative access to conversation with our the environment. Because environmental information, bodies, which is “produced humans are limited capacity the combined loss or deficit by particular bodies, with information processors, in both substantially reduces specific biographies, at we use aspects of our the sensory input available some specific time, in environment in order to from the environment and particular relationships, reduce cognitive workload, limits motor function within and interpreted as such by and maximize processing it. Cognitive development for interactional participants”. capacity. The fourth claim those who are deafblind will The specific shared code is that the environment is reflect these limitations and for communication part of the cognitive system. will benefit from the use of described develops from This is perhaps the most particular cognitive tools that this link of the body within contentious claim, effectively assist in making sense of the a certain environment suggesting a mind-world world. and is understood continuum in terms of through a process of information processing, Combined vision mutual interpretation and limiting the usefulness “ and collaboration. of considering mind as a and hearing Communication theories separate entity. The fifth addressing deafblindness claim is that cognition is impairments have been developed for action. Thus perception which, in essence, and memory are considered severely constrain accentuate a negotiation in terms of their role in process whereby cognitive determining and guiding interactions with development is assisted situation-appropriate the environment. through opportunities for behaviour. The sixth claim ” communicative interaction is that off-line cognition is (Souriau, 2002). Nafstad body-based; even remote According to the first and Rodbroe (2000, pg. 27) from particular activities in assertion above, real-time contend that individuals who the environment, cognition cognition has its basis in are deafblind refer to events is shaped by environmental situated activity, though by “whatever impression interactions. Wilson (2002) much of human cognition the deafblind individual provides a critical evaluation occurs ‘off-line’. A combined received from the event of these claims as they apply loss of visual and auditory through and directly on his to normal cognition, and input would seem to limit body”. Conceptual processing within cognitive science the level of abstraction becomes predominately and debate continues as regards that can occur in off-line directly mapped through the precise assumptions processing; thus cognition these impressions. How one and merits of the embodied would involve situated encounters the world while cognition approach. action and the memory performing an action in a However, for our purposes thereof. This emphasis on particular environmental the above assertions may situated action- an action context determines the way provide a useful framework that is situated in a cultural one forms concepts and within which to consider the setting, and in the mutually how they are represented nature of interaction with the interacting intentional and stored in memory. environment and conceptual states of the participants Conceptual categories assist development for individuals (Bruner, 1990) - seems most cognitive processes by who are deafblind. relevant to the deafblind representing information in

JULY – DECEMBER 2006 • DbI Review •5 Embodied Cognition

an economical way (Roth & cognitive processes and single system of analysis. Bruce, 1995). Aspects of the reducing cognitive effort. The man feels not with the world that are experienced by In the absence of speech, hand holding the cane but individuals who are deafblind which is true for a majority with the cane, and the world will become categorized of individuals who are is experienced through the and referred to based on a congenitally deafblind, cane almost as part of the specific bodily interaction or attempts at such adaptations body, the tool serving as given occurrence. may emerge in apparently an extension to the existing The second claim stereotypic behaviours. senses. With both distance regarding cognition being Signed echolalia, similar senses compromised, the time pressured seems to to the echolalia in speech world exists as it makes follow closely with the third and often regarded as a contact with the body and claim regarding off-loading stereotypic behaviour could the role of other people in cognitive work on to the be considered as a method of extending knowledge of it environment. Cognition has extending or externalising a becomes critical. Activities evolved with the pressures thought for some individuals which involve mutual of real-time interaction. who are deafblind. When attention to particular With vision and hearing used in a conversational aspects of the environment compromised the load that setting, signed echolalia may will enrich the capacity to the cognitive system can provide cognitive assistance represent that world for such normally bear, through use to sustain discourse. individuals. of mental images and stored The fourth claim of The last two claims representations for example, embodied cognition states of embodied cognition may be reduced. With vision that the environment are that cognition is for and , the off- is part of the cognitive action and that off-line loading of cognitive work system. The information cognition is body based. to the environment may be that flows between mind Cognition, by this view, is critical in how the body helps and world is continuous best understood in terms of the mind to perform more such that the body-world the production of situation- economically. Tactile objects system may be considered appropriate behaviour. of reference used in calendar as the basis for cognition Without the distance systems or in communication rather than the traditional senses to shape behaviour, books can be seen to support conceptualisation of mind developmentally, for those individuals who are deafblind as a separate entity. For who are congenitally at maintaining discourse Wilson (2002) this distributed deafblind the world has been while minimising the load approach to cognition is presented in a fragmented for internal processing. the most problematic of all and unpredictable way. Prevalent to this population the claims; however in the Consequences to behaviour are stereotypic and ritualised absence of distance senses cannot be readily anticipated, behaviours, like rocking or the impact of environment as for example when hand flapping, which have on the individual’s thinking someone might see or been examined with regard is immediate such that hear a touched object to their possible functional separation of thought from fall over. Without these and developmental benefits the surrounding environment senses, cognitive mapping (Murdoch, 2000). These becomes less palpable. develops from individualised behaviours may also play a Perhaps Anderson’s (2005) environmental experiences role in supporting cognition. example of the “blind that one who is congenitally In Goldin-Meadow’s (2003) man and his cane” (from deafblind may have and extensive research, gesture Merleau-Ponty, 1962) can ‘thinking’ would seem to has been found to be more explain how in some cases involve physical impressions than just communicative cognition is best understood directly related to such when it accompanies by considering bridges to interactions. The claim that speech, for it plays an the environment, that outer normal off-line cognition important role in assisting world, and the body as a is body based is attracting

6 • DbI Review • JULY – DECEMBER 2006 Embodied Cognition

support in empirical research Bodily Emotional Traces sensory input and social in recent years. Off-line (BETs) described by the DbI experience from birth, thus cognition refers to processes Communication Network minimal opportunities for such as mental imagery, (Daelman et al., 2004). acquiring communication recalling memories or Therefore reference to an skills arise. The cognitive daydreaming, which involve event will rely on specific processes necessary for the simulation of physical previous interactions, and language development events internally. Visual the emotional significance become associated with imagery, for example, would thereof, with understanding the specific way one who seem to be share processing of that event and the ability is deafblind interacts resources and have much to refer to it constrained with the environment. in common with visual accordingly. The embodied cognition perception. In the absence Individuals who are approach, by focusing on of visual and auditory input, congenitally deafblind the manner in which a mind, direct impressions on the face an arduous task in body and world mutually body are internalised. Off- attempting to acquire interact together, may prove line cognition grounded in language and communication informative with respect to bodily contact is evident in skills. This population is facilitating communication in natural gesture and in the deprived from both normal this group.

REFERENCES Anderson, M. (2005) How to study the Murdoch, H. (2000) Repetitive behaviours mind: An introduction to embodied in children with sensory impairments and cognition. In Santoianni, F. & Sabatano, C. multiple disabilities. DbI Review, 26, 7-11. (Eds.), Embodied cognition and perceptual Nafstad A. & Rodbroe I. (1999) Co-creating learning in adaptive development. communication. Dronninglund, Denmark: Cambridge: Cambridge Scholars Press. Forlaget Nord-Press. Bruner, J. (1990) Acts of meaning. Roth, I. & Bruce, V. (1995) Perception Cambridge, MA: Harvard University Press. and representation. Philadelphia: Open Daelman M., Janssen M., Larsen F.A., University Press. Nafstad A., Rodbroe I., Souriau J., & Souriau J. (2002) Sensation, perception Visser T. M. (2004) Congenitally deafblind and formation of meaning- what does persons and the emergence of social it mean when people are congenitally and communicative interaction. CNUS, deafblind? CNUS, Comunication Network Comunication Network Update Series, Update Series, Number 3. Nordic Staff Number 2. Nordic Staff Training Centre of Training Centre of Deafblind Services (NUD) Deafblind Services (NUD) Dronninglund, Dronninglund, Denmark. Denmark. Thelen, E., Schoner, G., Scheier, C., and Goldin-Meadow S. (2003) Hearing gesture: Smith, L.B. (2001). The dynamics of how our hands help us think. Cambridge, embodiment: a field theory of infant MA: Harvard University Press. perseverative reaching. Behavioral and Goode, D. (1994) A world without words: Brain Sciences 24, 1-86. the social construction of children born Wilson, M. (2002) Six views of embodied deaf and blind. Philadelphia: Temple cognition. Psychonomic Bulletin & Review, 9 University Press. (4), 625-636. Lakoff, G. & Johnson, M. (1999) Philosophy in the flesh: the embodied mind and its challenge to Western thought. New York: Basic Books.

JULY – DECEMBER 2006 • DbI Review •7 Africa

Creating a federation of deafblind people in Africa

Lex Grandia, President of the World Federation of the Deafblind reports on the outcomes of an important meeting for deafblind people across the continent

n October 2006, a one week Danida. - very few have been educated in seminar was organised for As President of the World any communication system for IAfrican deafblind leaders in Federation of the Deafblind I deafblind people Mombasa, Kenya. Eight deafblind participated and contributed to - deafblind people are the leaders from eight African the seminar, and so did major poorest of the poor countries participated very actively stakeholders in the area like AFUB, - many never went to school or in this event. They were: David the African Union of the Blind, Sense had any education Shaba – Tanzania, Joash Imbwana International, Uganda and CBM. - healthcare is often inaccessible – Kenya, Roman Mesfin – Ethiopia, The aim of the seminar was to deafblind people Andre van Deventer – South Africa, to explore the need to create - there are almost no assistive Ezekiel Kumwenda – Malawi, an African Federation of the devices available, like hearing Agnes Abukito – Uganda, Roman DeafBlind. aids, eye glasses, white canes, Mesfin – Ethiopia, Noukany Braille machines, magnifying Bagayoko – Mali, Sansan Dah Change is on its way? systems or computers – Ivory Coast This was the 4th meeting of the - there are no job possibilities The event was organised African deafblind leaders in 2 and very few income generating jointly by the Secretariat of the years, and the seminar used the activities “African Decade of Persons with Logical Framework Approach - deafblind people are often Disabilities”, UN initiative which (LFA) to explore the questions: runs from 1999 to 2009, and by victims of abuse and have a why an African Federation of the higher risk of getting HIV/AIDS Penny May Kamau, leader of the DeafBlind? What problems do - there is hardly any awareness East African Deafblind project, we face in Africa? In answer we of deafblindness and very little supported by FSDB and of Sweden. identified many factors: The “African Decade” Secretariat knowledge about education, rehabilitation, communication received financial support from - deafblind people in Africa are methods and technical aids for the Danish development agency, very isolated deafblind people

8 • DbI Review • JULY – DECEMBER 2006 Africa

- It is difficult to form national This will be achieved through organisations due to lack of networking, partnership, resources, long distances and capacity building, awareness poor infrastructure raising, information sharing, lobbying, advocacy and technical A Way Forward support.” Clearly, it was easy to formulate After this inspiring work, we the problems, but most of these continued to work to develop a are best solved on a national constitution. level. What benefit would national organisations have of a We are searching for French continental African representative WFDB view speaking partners for deafblind organisation? The group spent The World Federation of the organisations in Mali and Ivory two days formulating a mission DeafBlind, as an international Coast and we also need partners statement for an African Federation representative organisation of for Kenya, Malawi, Ethiopia, of the DeafBlind, and considering deafblind people, strongly wants Zambia and Tanzania. its activities for the first five years to support this development in after its foundation. It was a very Africa as much as we can, but I hope all members of DbI will productive discussion. our resources are limited. Our consider a possible partnership. experience is that partnership The mission was formulated as between an African national Lex Grandia follows: deafblind organisation and an organisation or institution in a “The mission of the African country, which has many years Federation of the DeafBlind of experience in the deafblind (AFDB) is to empower national area, can be very productive. deafblind organisations and Deafblind South Africa, DBSA to act as the unifying voice has a partnership with the of deafblind persons in Swedish deafblind organisation Africa, which will ensure that FSDB and the new deafblind deafblindness is recognised and organisation in Uganda, NADBU, deafblind persons are recognised has a partnership with the Danish as persons with dignity, equal deafblind organisation, FDDB. rights and opportunities.

JULY – DECEMBER 2006 • DbI Review •9 PrevalenceSubhead here of deafblindness in old age

20 times more elderly people with a vision and hearing loss?

Ole E. Mortensen, Director of Information Center for Acquired Deafblindness, Denmark reports on his work studying prevalence of deafblindness in the elderly population and brings forward some important findings.

p till now we have been able to pinpoint Lillehammer, Norway have estimated a the magnitude of this issue Senior Researcher, Kolbein Uprevalence of 0.33 and use this knowledge for Lyng, from Norwegian Social percent - approx. 750 people a concentrated information Research (NOVA), and the – in Denmark over the age and awareness raising effort deafblind consultant Else- of 80 with such severe aimed at politicians and the Marie Svingen, Skådalen dual sensory impairment public through the media. Resource Centre, Oslo have that they can be definedPrevalence as Our of initial survey in 1995 conducted several studies of deafblind (see facts box).deafblindness This – indicating in aold prevalence of elderly people with acquired prevalence was based on a 0.33 percent – created quite age deafblindness in Norway. Danish demographic survey a stir and based on this, the In one of the studies, they from 1995. However, two Centre introduced a series mapped the prevalence newer and more thorough of initiatives targeting the of severe dual sensory scientific studies from the elderly deafblind and their impairment in elderly people other Scandinavian countries professional carers. About in Lillehammer Municipality reveal prevalence of dual 750 elderly people over 80 (Lyng and Svingen 2001). sensory impairment that are years old with severe dual The study focussed on the several times – maybe up sensory impairment was elderly who were in contact towards 20 times – larger! A considered to be a very high with local social services, further four studies support figure in those days – both either because they received these results in different nationally and internationally. home help or home nursing, ways, and in this article we But now, based on surveys or because they lived in a take a closer look at them all. more thorough and valid nursing home. Around 75% Not very much scientific than ours was, it seems that were over the age of 80, and interest and attention we must accept a prevalence the average age in this group have been invested that is many times higher! in the prevalence of concurrent vision and hearing impairment. At FACTS BOX: the Information Center for Acquired Deafblindness in Nordic definition of deafblindness Denmark we have searched the scientific literature and The first lines of the Nordic definition from 1980 read: found six studies, which we have analysed to get a “A person is deafblind when he or she has a severe degree clearer view of the extent of combined visual and auditory impairment. Some of age-related dual sensory deafblind people are totally deaf and blind, while others impairment in Denmark. have residual hearing and residual vision.” There are no registers of people with dual sensory (Please note: The Nordic definition is being revised, and a impairment in Denmark, but new definition is expected to be introduced late 2006) by using this approach we

10 • DbI Review • JULY – DECEMBER 2006 Prevalence of deafblindness in old age

was around 87 (from 69 to FACTS BOX: 100-year-olds). There were 719 participants Age-related hearing impairment in the study. The starting point was a checklist which Typical age-related hearing impairment is most severe the municipal staff were in the higher frequencies. Impairment can be relatively asked to fill in for each light at 500 Hz, slightly worse at 1000 Hz, somewhat of their clients. Using this worse at 2000 Hz and very much worse at 4000 Hz. checklist, Else-Marie Svingen When specifying a hearing impairment of e.g. 40 dB, it conducted interviews with is the average of four different frequency ranges, 500, those elderly people who had 1000, 2000 and 4000 Hz. So when the average hearing problems with their vision impairment in these frequencies is 40 dB, the impairment or hearing, and who wished is often very much higher than 40 dB in the high to be assessed to see if they frequencies than in the low. It is the high frequencies, met the Nordic definition of particularly those from around 1800 to 2500 Hz that are deafblindness. important for the understanding of speech The study demonstrated that four percent of the elderly in Lillehammer, who pure tone or WSV, in fact corresponded received municipal home by a whispered and spoken to an average hearing help and/or home nursing voice test (WSV). Pure tone impairment of 50 dB or who lived in a nursing audiometry is a “traditional” measured using pure tone home, had such severe dual in which the audiometry. Thus, the results sensory impairment that they subject is presented with of the hearing test – and came under the definition of tones in different frequency the number of people found deafblindness. Among the ranges and with different – vary depending on which people living at the nursing volume and indicates when method is used. However, in home, the prevalence of age- they have heard something. this study, “moderate hearing related deafblindness was as The WSV is a simple test in impairment” corresponds to high as 10%. which the examiner stands at least an average hearing According to this study, behind the subject and tests impairment of 40 dB. almost 7,500 Danes how close they have to be are presumed to have before the subject can hear such severe dual sensory the whisper. According to this study, almost impairment that they can be “ In Rosenhall and 7,500 Danes are presumed to diagnosed as deafblind. Bergman’s delimitation of the group with dual have such severe dual sensory Longitudinal study in sensory impairment, they Gothenburg used a moderate hearing impairment that they can be In 2000, ophthalmologist impairment as the upper Birgitta Bergman and limit for hearing. In diagnosed as deafblind” audiologist Ulf Rosenhall WSV, “moderate hearing concluded a major study of impairment” is defined as the the relationship between inability to hear a whisper in this hearing and visual problems further than one metre study was defined as a visual in old age (Bergman and away, while in pure tone status of 0.3 (also known Rosenhall 2001). 973 people audiometry it is defined as a as 6/18), i.e. equivalent to in Gothenburg had their 40 dB hearing loss or more the limit for partially sighted hearing and vision tested (as an average at 500, 1000, people in Denmark (see facts three times: as 70-year-olds, 2000 and 4000 Hz). box). How many people had as 81-82-year-olds and as 88- In this study, however, it even poorer vision was not year-olds. turned out that what was apparent from the study. Hearing was tested in interpreted as a moderate one of two ways, either by hearing impairment using the

JULY – DECEMBER 2006 • DbI Review •11 PrevalenceSubhead here of deafblindness in old age

FACTS BOX: And as the Norwegian study shows, there may be Visual status individuals with poorer visual Visual status is calculated as a ratio between normal acuity and hearing, who are vision and the vision of the subject. A visual status of 0.3 not considered deafblind (or 6/18) means that the subject can see at six metres according to the functional distance what somebody with normal vision can see at 18 definition. metres. With this vision you are entitled to visual aids and In the Gothenburg study, training at eyesight centres. The legal limit for driving a the prevalence of severe dual car in Denmark is a visual acuity of 0.5 (6/12). sensory impairment was calculated among 70-year- olds, 81-82-year-olds and Results Norwegian study above, they 88-year-olds, but not in the The study presented the gathered objective vision and +80 group as a whole. To following results: hearing information from find an overall prevalence, we the elderly. The participants therefore have to pull out the also received a visit from calculator. ● At 70 years of age: Dual sensory impairment was an experienced deafblind We know that the not pronounced and 70% consultant who assessed prevalence of acquired had normal vision and their sensory functionality deafblindness increases with hearing. in relation to the Nordic age. Three to six percent of definition of deafblindness. the subjects in the 81-82- ● At 81-82 years of age Of 25 elderly people who had year-old group had a severe (vision and hearing tested a visual acuity of 0.3 or worse dual sensory impairment, and on a total 207 subjects): and an average hearing so we can assume that this three to six percent (WSV impairment of at least 40 dB figure is a minimum for the and , measured using pure tone entire group up to 88 years respectively) had at least audiometry (i.e. which is the of age. This means that there a moderate hearing same as the limits set in the should be between 4,000 and impairment together with a Swedish study), all except 8,100 elderly people between visual impairment of 0.3 or two were assessed by the 81 and 87 years of age more. deafblind consultant to be with a severe dual sensory ● At 88 years of age (vision deafblind in accordance with impairment in Denmark. and hearing tested on the definition. In the group of 88-year- a total of 167 subjects): One can thus with a olds, the prevalence increases Eight to 13 percent (WSV certain degree of confidence to between eight and 13 and pure tone audiometry, presume that most of the percent and so we can respectively) had at least people in the Swedish study assume that this at least also a moderate hearing are also deafblind according applies to those who are impairment together with a to the Nordic definition. even older. This gives figures visual impairment of 0.3 or of between 4,500 and 7,300 more. 3.8 to 6.9 percent with severe dual sensory prevalence impairment in this age group. “But does this mean that In total, the Swedish study It is however extremely they are deafblind?” the reveals that there should be important to point out that sceptical reader may well between 8,500 and 15,400 this does not mean that this ask knowing that we in the elderly people in Denmark can be used as a quantitative Nordic countries – as well above the age of 80 with criterion for deafblindness. as other countries – use a a dual sensory impairment There are deafblind people functional definition for (defined as a visual acuity of who hear better than 40 dB deafblindness. Here the 0.3 or poorer and a hearing and/or see better than 0.3, answer must be, “Not all loss of 40 dB or greater) – an but who are still defined as – but probably most of overall prevalence of between deafblind according to the them.” 3.8 and 6.9 percent in the In Lyng and Svingen’s Nordic functional definition.

12 • DbI Review • JULY – DECEMBER 2006 Prevalence of deafblindnessSubhead in old here age

+80 age group based on a contrast to the Norwegian colleagues from Sydney population of 220,000 in this and Swedish studies above, University in Australia age group in Denmark. which measured the vision examined hearing and And as seen from the and hearing in the best vision in 49 elderly people experiences of the Norwegian eye and . Naturally, this between 65 and 99 years study, most of these will produces a much greater of age (average age around probably also fall under the prevalence of hearing and 82), who were applying for definition of deafblindness. visual problems in this study. municipal care/nursing (Jee In Beaver Dam, they et al. 2005). 12.2% of the Macular degeneration carried out eye examinations subjects had a combination and age-related to see if there were signs of at least a moderate hearing impairment of maculopathy, but not hearing impairment (40 dB visual acuity tests and that on average) and a visual The paramount cause of is important to keep in impairment equivalent to acquired deafblindness mind. In addition, a hearing a visual acuity of 0.5 and is a combination of age- impairment of 25 dB is not a below. A visual acuity of 0.5 related hearing loss particularly severe impairment is not a particularly severe (presbyacusis) and age- and since they measured impairment, but still it is the related maculopathy such the weakest eye and ear, we lower limit for obtaining a as macular degeneration. If cannot say how many of the driver’s license in Denmark. the number of elderly people 39.5% actually had a severe The number of people with with severe dual sensory dual sensory impairment. even poorer vision was not impairment really is as high as But, as both age-related apparent from the study. the Norwegian and Swedish hearing impairment and age- That the occurrence of studies indicate, then these related maculopathy such as dual sensory impairment two sensory problems must macular degeneration often rises strongly with age is quite often occur together to develop with age, the study also demonstrated in a study a lesser degree. And this has clearly demonstrates that from Denmark. In 1990, been demonstrated by other at least the conditions for Agnete Parving and Bent studies. a high frequency of severe Philip at Bispebjerg Hospital At the end of the 1990s, dual sensory impairment are drew up a questionnaire for Ronald Klein and a group present. 185 users aged of audiologists and Of particular additional from 90 to 107, of whom ophthalmologists studied the interest was the fact that as many as 44% stated that relationship between age- people with late age-related they were also “blind” or related maculopathy and age- maculopathy – i.e. where the “had very limited vision” related hearing impairment disease had developed over a (Parving and Philip 1991). in the inhabitants of the longer period of time - were That they were using hearing small American town Beaver three times more likely also aids most probably meant Dam in Wisconsin (Klein et to have hearing impairment that these very elderly people al. 1998). The aim was to than people without the had at least a moderate find those cases where an late age-related changes hearing impairment. For average hearing impairment – indicating a connection most of these, this therefore of at least 25 dB occurred in between these two sensory meant such severe dual conjunction with age-related problems. sensory impairment that it macular degeneration or pre- came under the definition of stages of this. Australian, American deafblind. In 39.5% of the subjects and Danish studies The National Health above the age of 75 this Interview Survey has been The high occurrence of was found to be the case. carried out in the United age-related dual sensory However, it is worth noting States over many years and impairment has been that Klein and his colleagues has studied Americans’ health demonstrated in a further recorded the condition of in many areas, including three studies. In 2005, the retina and hearing in hearing and vision. Among Jeanette Jee and her the weakest eye and ear, in the participants aged 80

JULY – DECEMBER 2006 • DbI Review •13 PrevalenceSubhead here of deafblindness in old age

years and older who were at least a moderate hearing dual sensory impairment asked about their own impairment measured on the must occur in numbers many perception of visual and best ear (Hietanen 2005). times greater than we - in hearing problems (from Dr Carsten Edmund, Denmark, at least – have 1997 to 2002), 16.6 % of ophthalmologist and estimated so far. them stated that they had a chairman of Øjenforeningen dual sensory impairment to Værn om Synet (“the Eye References some extent or other (Caban Association Protect the Lyng K and Svingen EM: et al. 2005). However, the Sight”), has in a recent Kartlegging av alvorlig, study revealed large ethnic article estimated that there kombinert sansetab hos eldre differences; for example, the are around 39,000 blind NOVA Rapport 9/01, 2001 occurrence of dual sensory and partially sighted elderly Bergman B and Rosenhall U: impairment in Americans of people above the age of 80 Vision and hearing in old age. Indian or Inuit descent was in Denmark, primarily due Scandinavian three times as high as that in to macular degeneration 2001; 30 (4); 255-263 Americans of Asiatic descent. (Edmund 2005). This estimate is based on registration of Klein R, et al.: Different studies – the the visually impaired in six Is age-related maculopathy related to hearing loss? same picture of Denmark’s 17 counties, and Carsten Edmund even Archives of Ophthalmology The studies discussed here believes it to be even lower 1998; 116 (3); 360-365 have used different methods due to inadequate reporting. Jee J, et al.: Vision and and focussed on different If we correlate the number hearing impairment in aged groups of elderly people. of blind/partially sighted care clients. Even if the results are not elderly people (i.e. with a Ophthalmic Epidemiology therefore immediately visual status of or poorer 2005; 12 (3); 199-205 mutually comparable, seen than 0.3) with a 25 % together they draw a clear occurrence of moderate Parving A and Philip B: picture of the need to hearing impairment among Use and benefit of hearing reassess our views on the elderly in Denmark as aids in the tenth decade number of elderly people demonstrated in the Nordic – and beyond. Audiology with severe dual sensory study mentioned above, 1991; 30 (2); 61-69 impairment in Denmark – and there should be around probably in other countries Caban AJ, et al.: Prevalence 10,000 people above the age as well. of concurrent hearing and of 80, who are both partially As mentioned, we have visual impairment in US sighted or blind and who no registers of people with adults: The National Health have at least a moderate dual sensory impairment or Interview Survey, 1997-2002. hearing impairment. This deafblindness in Denmark. American Journal of Public figure is in fact very close However, we do have valid Health 2005; 95 (11); 1940- to the ones from the figures for the prevalence 1942 Gothenburg study, which of both hearing and visual used the same limits for Hietanen A, et al.: Hearing impairment, and these vision and hearing. among 75-year-old people strongly support the results So there is a highly in three Nordic localities: a from the studies above. convincing correlation both comparative study. In Denmark it is widely between the international International Journal of accepted that approx. half of studies themselves and also Audiology 2005; 44 (9); all elderly over the age of 75 when compared with the 500-508 have some degree of hearing Danish figures for visual impairment. A Nordic study Edmund C: and hearing impairment from 2005 with 339 elderly Synshandicappede i Danmark respectively. It therefore subjects from Denmark – antal og årlig tilgang seems that there is no way revealed that 25% of 75- Værn om Synet 2 – 2005 around the fact that we need year-olds in Denmark have to acknowledge that severe

14 • DbI Review • JULY – DECEMBER 2006 Elderly people in the Netherlands

Elderly people in the Netherlands

Frederike Galle

These pictures tell a successful story. This project in the Netherlands is a collaboration of key organisations: Bartiméus Sonneheerdt, Kalorama and Viataal. They offer day programmes for elderly deafblind people, at different locations. The participants have access to different types of training and rehabilitation and they participate in social activities.

JULY – DECEMBER 2006 • DbI Review •15 SubheadBogota school here

Welcome to school

“No child or teenager should be without the opportunity to study”… how one exceptional school responded to the needs of deafblind children.

Patti V. Jones, Principal of Filadelfi a School for Deaf Children in Bogota, Colombia describes the exciting partnership that led her to achieve her wish to include deafblind children and young people in school programmes. Along the way we meet a group of inspiring school students who have made it happen for one young person and hear about the plans for the future!

everal years ago, there support and accompany the have a very dedicated staff was a deaf teenage process. To our delight and of 14 teachers, both deaf Sstudent in our school surprise, one of those three and hearing. The School who began to lose his sight students was José Richard! uses bilingual education for due to . the Deaf, with Colombian Although we all tried, and During their first as the he tried, the school did not “ language of instruction, and have a program that could days at school, the written Spanish as a second meet his needs and so he language. There is a positive dropped out of school. This three students were and strong relationship was sad for all of us as he made welcome and between the 118 students had studied with us since he and their teachers. was a young boy. When the have had a good As Liliana Montoya from school was founded, we had SURCOE and I discussed wanted to have a program integration into the how to begin this new step, for Deafblind children, but we decided that preparing with no resources and no one school community. the teachers and students to orient us, we said goodbye ” was important. The teachers to José Richard. It has been an interesting were given a workshop In September of 2003, and enjoyable experience that had both information we were contacted by for the Filadelfi a School on deafblindness as well SURCOE, the Colombian for the Deaf, Bogota, as practical experiences to National Federation of Colombia. We have 20 give the teachers a greater the Deafblind about the years of experience with the understanding of what the possibility of receiving three Deaf, have graduated 90 new students would need Deafblind students with the high school pupils who are and how they related to their understanding that they now in university, technical environment. Secondly, the would give us technical schools, or working, and deaf high school students

16 • DbI Review • JULY – DECEMBER 2006 Bogota school

It’s not just about the classroom!

had a similar workshop. This opened my understanding challenges and diffi culties? was a huge success, and to the possibilities open to It is one thing to be willing, the fact that some of Jose our students and I must but another to face the Richard’s former classmates say I had a wonderful time challenges related to day- were still in school and meeting so many new to-day struggles of the remembered him helped a people. It was a great help students in the classroom. In great deal. The students were to get fi rst hand knowledge the beginning, SURCOE was anxious to make him feel at of what is going on at a able to provide volunteers home and to be involved in global level, and particularly who came to interpret for any way possible. to see the advances made Jose Richard while the other During their fi rst days at in Latin America. All of this two students were able to school, the three students was shared with the School, use the vision they had and were made welcome and and the vision related to the participate in class without have had a good integration Deafblind students grew. I a hands-on interpreter. into the school community. hope to see some of them Unfortunately, the volunteers As well as being the school participating on behalf of had other commitments such principal, I am an interpreter Colombia in the future! The as university studies and and had the marvelous president of SURCOE, Beatriz were unable to continue. At opportunity to interpret for Vallejo, has shown constant that point an unusual thing the Latin Americans (spoken support and encouragement happened, classmates began English to Spanish) at the as our deaf student body to take turns interpreting for Conference and and school community has Jose Richard. Obviously, this the meetings of the World learned about the uniqueness is not the best situation, as Federation of the Deafblind of deafblindness. they are also studying, but in Finland in 2005. This What were some of the the human values expressed

JULY – DECEMBER 2006 • DbI Review •17 Bogota school

The playground is fun too

and the attitude of solidarity strength. This has increased two of the students. The has enhanced their lives. With their ability to support and program now has 7 deafblind no complaints, they have encourage their children. students, from 10 years of faithfully interpreted during age to over 20 years old. class, during break times, One of the Working together, we have on fi eld trips, and in social “ been able to include two gatherings. Two students most encouraging other Deafblind students in expressed to me their desire the program. One of these to go to university to prepare elements of the students uses Braille, so themselves to work with program has been we have gone to class and the Deafblind in the future. the teachers and students One of these students lives the renewed vision will soon be learning both close to Jose Richard and has Braille and the use of the accompanied him each day of the parents of the abacus. Our School feels that both to and from school on every experience is good for the public transportation, deafblind students the Deaf, no doors should buses. Their willingness and ” be closed, and the more his motivation to learn have During the last few months, opportunities given, the allowed him to reach 10th with the organizational more they will show their grade. In Colombia, students ability of Sense International ability to become responsible, graduate from high school Latin America, an alliance contributing adults who will at the end of 11th grade, has been formed between strengthen their community. so we are looking forward Sense, SURCOE, a parents’ We expect to expand to seeing him graduate in organization and an the program and use this December, 2007. He has had institution for those with experience to provide the unwavering support of multiple disabilities, our guidelines for other programs his mother, in spite of their school and the capital city’s within the country. No diffi cult fi nancial situation. Secretary of Education. The child or teenager should One of the most government is now paying be without the opportunity encouraging elements of for the Deafblind students to study, and those studies the program has been the who are minors, and we should be within a quality renewed vision of the parents are seeking funds from program that meets the of the Deafblind students. other government sectors Deafblind student’s needs. Knowing that the school is to subsidize the students We hope to see Jose Richard working with them, seeking who are older than 18. A graduate from high school to improve their educational project has been developed next year and he is already opportunities and concerned that will improve the services making plans for his future! for the wellbeing of the and hopefully provide for entire family has given them full-time interpreters for

18 • DbI Review • JULY – DECEMBER 2006 DbI World Conference – Perth

JULY – DECEMBER 2006 • DbI Review •19 TheSubhead Forgotten here Senses

The Forgotten Sense – Proprioception

This is first in a series of articles by David Brown, Education Specialist with California Deaf-Blind Services, exploring the part that the less well-known senses play in our development and the lives we lead

Introduction about these ‘other’ (I would in assessing and working There is still much that we say ‘forgotten’) senses will on these other sensory don’t understand about early give you a different way of systems, yet they traditionally brain development, about looking at yourselves and at receive no training at all the development of sensory other people, and should also in deafblindness, so we processing abilities, about help to make children with would all benefit from a the way we develop the deafblindness less puzzling in two-way exchange between ability to use all our senses their behaviors. educationalists and therapists simultaneously without In the field of deafblind to share our knowledge bases confusion, and about the education we have that are complementary yet complex interaction of these traditionally, and for rarely meet. Consideration abilities with personality obvious reasons, focused of all the sensory systems, type, and with early life on the senses of vision and and the ways that they experiences. When we hearing and on strategies work together, can help us consider these issues for for improving the use of any to be more effective in our children with deafblindness residual function that may educational assessments our knowledge is even more be present in both of these and in our teaching, and can limited; the population is distance senses. At the same clarify that complex situation extremely diverse in terms time we have also, as I have whereby: of ability and disability, and said, paid some attention increasingly we see children to the sense of touch as “The brain, the organ that who demonstrate difficulties an important information is responsible for your with all sensory systems, channel that can help to conscious experience, is not just with vision and compensate for loss of visual an eternal prisoner in the hearing but also with the and auditory information. solitary confinement of ‘other’ senses – the touch, The other sensory the skull…and must rely taste, smell, proprioceptive, systems, the taste, smell, on information smuggled and vestibular senses. Apart proprioceptive, and vestibular into it from the senses…the from some work on touch senses, have received very world is what your brain there has been very little little attention from us, even tells you it is, and the research to look at any of though together they provide limitations of your senses these ‘other’ senses in this the essential foundation set the boundaries of your diverse group of children, upon which all of our higher conscious experience.” but we do know from vision, hearing, and touch Coren, Porac & Ward experience that difficulties skills are based. These other Sensation and perception with vestibular and sensory systems also offer (1984, p2) proprioceptive functioning, valuable channels to the in particular, always need children for learning and to These topics are usually to be addressed first if the us for teaching. In the field considered to be the children are to make the best of occupational therapy, specialist area of physical possible progress in using physical therapy, and speech therapists and occupational touch and residual vision and therapy the situation is quite therapists, but as a teacher I hearing effectively. Knowing the reverse. Therapists have have been studying them for long been trained and skilled three decades in the context

20 • DbI Review • JULY – DECEMBER 2006 The Forgotten Senses

In order to use her residual vision to look at fine details in a book Amy needs to be horizontal with her entire body and head fully supported: having one ankle up on the other knee sends her brain a strong message, through the proprioceptive sense, that her lower body is fixed and stable and not moving.”

of working with a large and also ‘see’ them in our mind’s learned through experience varied population of children eye), without actually having and improved through with deafblindness, so this to touch them with a hand or practice). Proprioception is is definitely a teacher’s look at them with our eyes, a strange word, actually a perspective. These topics is an ability that we get from combination of two Latin are also very complicated, our proprioceptive sense. words that means ‘an and although I have tried to This sense helps us to plan, awareness, or a feeling, of simplify the material there to position, and to grade our one’s own self’. Most people are certain jargon words and movements without always have never heard of this phrases that have to be used; having to use vision to check sense, and when they use the knowledge of this vocabulary what we are doing. You can single word ‘touch’ they are is important because the feel this sense working if you usually thinking about several specialized words and close your eyes and place different sensory systems, phrases are likely to come your right index finger on including proprioception up in medical and therapy your nose, and then touch as well as perception of reports on the children with the same finger on to the touch, pain, temperature, whom you live and/or work. tip of your left thumb; the and vibration. In fact touch proprioceptive sense is not is a system that provides The sense of infallible so you may miss us with so many different Proprioception your targets a little, but with forms of information, with repeated practice your aim so many complex and The way we can ‘feel’ where will improve significantly contradictory elements, that all our body parts are in (which reminds us that some writers have said it relation to each other (and proprioceptive abilities can be may actually be misleading

JULY – DECEMBER 2006 • DbI Review •21 The Forgotten Senses

Nick is seeking strong visual senses, all challenges proprioceptive information that are very common in the to help him know where population of children with his body is - strong deaf-blindness. We have all pressure from the swing experienced temporary loss on his stomach,upper of proprioceptive perception and lower body streching when a leg ‘goes to sleep’ undergravity, and both arms inside his tee shirt for after we have been sitting extra pressure. for a while with it folded beneath us, with the result that the blood circulation to the leg has been cut off; for a brief period we can’t ‘feel’ the leg or the foot at all and to speak of a distinct ‘sense the force applied, and the it is very difficult to stand and of touch’. Other writers have direction of the stretching bear weight on it because claimed that proprioception or compression, and also the ankle and the knee refuse is actually a specialized depending upon the angle to lock and remain stable variation of the sense of of every joint. We talk about for us. We use a variety of touch that encompasses the this sense enabling us to behaviors like shaking the sensations of joint motion ‘feel’ where our body parts leg, rubbing it firmly with (known as kinesthesia) are, but this does not mean our hands, patting it hard and the sensations of joint ‘feeling’ like ‘touching’ one with the hands, or trying position (known as joint body part with another – it is to stamp the foot on the position sense). As I talk an entirely internal sensation. floor – and all of these are about proprioception you will strong proprioceptive stimuli notice how often I mention Why does it go wrong, – in order to restore normal the sense of touch as well, and what happens sensation and function as since they operate together when it does? quickly as possible. so closely. A normal range of muscle When a child has a proprioceptive sense that is The proprioceptors tone is needed for this sensory system to work not working properly some The receptors of the efficiently and effectively, common outcomes may be: proprioceptive sense so anything that causes ● An inability or a reluctance (which are known as abnormal muscle tone to push up on the hands the proprioceptors) are will interfere with the and arms when laying face located in the muscles effective working of the down due to low muscle and joints throughout proprioceptors. Injury, tone and an inability to the body, and they are surgery, arthritis, cerebral ‘feel’ and control the sensitive to stretching and palsy and other kinds of brain joints in the fingers, the to compression. When this damage, poor circulation, wrists, the elbows, and the sense is working effectively and poorly modulated muscle shoulders. the brain, at all times, has tone (that is, muscles which ● An inability or reluctance an awareness of where the are too stiff or too floppy, to stand and bear weight various body parts are in or which can only alternate due to low muscle tone space, if they are moving between these two extremes) and an inability to ‘feel’ or not, and how fast and can all result in diminished and control the joints in in what direction they are proprioceptive perception the toes, the ankles, the moving. This constant and awareness. Problems knees, and the hips, while ‘running’ awareness is with the proprioceptive sense also maintaining vertical conveyed to the brain can be made worse when stability in the spine. depending upon which there are also difficulties ● Frequent use of the arms proprioceptors are being with the vestibular sense, and hands to prop the stretched or compressed, and and with the tactile and head or the upper body,

22 • DbI Review • JULY – DECEMBER 2006 The Forgotten Senses

or frequently needing to graded movements), As I talk about proprioception lean against furniture, when touching, patting, “ walls, posts, trees, or other grasping, pushing and you will notice how often I people. pulling, and lifting or ● Heavy foot stamping, placing things. The child mention the sense of touch sometimes several times may adopt abnormally high with each step, when muscle tone, use strong as well, since they operate learning to walk – literally movements, an over-firm ‘feeling the feet’ through grip, and excessive force in together so closely” a combination of tactile making contact with people sensation and, especially, or objects, all of which one ankle up resting on the this strong proprioceptive may be mis-interpreted as other knee, or the legs tightly input. aggressive, rough, clumsy, crossed, or the legs twisted ● Paradoxically, after months or inattentive by others. around the chair leg, or the or years of forceful flat foot ● Seeking strong pressure or fingers crossed or bunched slapping on the floor while stretching inputs. Examples together, or the hands tightly independent walking is would include squeezing fisted, or the arms folded developing, some children, into tight spaces like a in front of or behind the once walking is mastered, cardboard box or under a body). These postures provide develop and prefer a tip- chair, crossing or twisting essential extra tactile and toe barefoot style, the bare limbs around each other, proprioceptive information feet maximizing tactile binding body parts with to the brain about where the sensation, and being on cloth or string or rubber child’s limbs are in space, and tip-toe maximizing the bands, pulling the teeth they also confirm for the child proprioceptive (pressure) and lower jaw downwards, that their body is securely input through the feet, grinding the teeth, tapping ‘fixed’ and not moving or the ankles, the calves, the things on the teeth, floating around. knees, the thighs, and the banging on the face or buttocks - a different way head, clapping or flapping What can we do to of ‘feeling’ the muscles in the hands, swinging the help? the legs and the feet by legs through space while ● Consultation with an seated, hanging doubled tightening them up so that occupational therapist over a bar or swinging from the brain knows exactly (preferably trained in it by the arms, jumping up where they are and what Sensory Integration and down with the ankle they are doing. Therapy) and a physical and knee joints as locked ● Clumsy, poorly coordinated therapist, sharing any as possible, hammering an movements, so that observations you have object on the floor or on a sometimes the child must made of the kinds of table, kicking heavy objects make several attempts behaviors mentioned like furniture or doors). to achieve the desired above. As well as specific outcome. Children may Excessively high or low therapy suggestions use specific self-taught muscle tone is usually the therapists may have strategies to minimize associated with poorly ideas on environmental errors, such as close visual modulated tactile and adaptations that will scrutiny, or sliding the hand proprioceptive senses in these facilitate better control of or arm along a wall or a children, tactile defensiveness movements, or ideas to table in order to reach for may be present, and make it easier for the child an object, which provides awareness of touch, pain, to succeed at a range of tactile information about and temperature may be appropriate motor activities their movements and helps poor, or fluctuating. (for example, simplified to stabilize the arm, as they Children often adopt equipment, simplified task, reach. specific postures (for providing extra physical ● Use of too little force, or example, flat on the back supports, providing a of excessive force (poorly with both legs bent and heavier spoon or baseball

JULY – DECEMBER 2006 • DbI Review •23 The Forgotten Senses

bat or pen as appropriate ● Binding of whole body diminished proprioceptive to increase proprioceptive parts or specific joints, for feedback enhances the risk sensation, or using clearer example using a blanket, or of injury it is always a good visual markers). tight gloves, Lycra sleeves idea to seek professional or Lycra clothing. Bracing ● Consult with an Adapted help and guidance with any Physical Education and wrapping have been of these large movement/ teacher for older school- used with adults with strong input activities, aged children, share any proprioceptive problems and to ensure that there is observations you have following illness, injury or always an appropriate level made of the kinds of surgery, and this is reported of adult monitoring and behaviors mentioned to serve a sensory function supervision. above, and implement the in addition to a mechanical As with any sensory specialist’s suggestions. function. For example, an deficit, poor proprioceptive elastic bandage has been ● Deep pressure massage, functioning can be difficult known to enhance joint brushing protocols, and to identify and assess, position sense in patients rhythmic joint compression. particularly when it is only with osteoarthritic knees These might be part of a a part of a wider pattern as well as in patients after specific Sensory Integration of sensory and other significant knee surgery. Therapy program, or they impairments. However, could be considered more ● Sports coaching programs like the other ‘forgotten as part of a conversational and sports injury clinics sense’, the vestibular, it activity between you and use proprioceptive training is crucially important to the child. Rhythmic joint ideas a lot, and it is also a all areas of functioning, compression and stretching major component of the so proprioceptive abilities of fingers, arms, legs, or Alexander Technique and and challenges need to be the head and neck can be other related disciplines, assessed carefully for any extremely motivating for and learning a little about child with deaf-blindness. The children with this type of these might trigger some pressure that they feel needs sensory difficulty and might relevant ideas. to be primarily through their be a useful strategy to help ● Chewing gum or ‘chewy’ proprioceptors, rather than you to build a relationship items that stimulate from people in their lives who with a child who is avoiding strong proprioceptive look at them and can only social contact. They can input through the jaw can jump to quick conclusions also help to ‘wake up’ the be rewarding for these and think in terms like proprioceptive system for a children, and can result in ‘clumsy’, ‘aggressive’, ‘mean’, period of time, which may better regulation of arousal and ‘lazy’. facilitate better perception levels for calming and and performance in specific attending, and in improved This article has been developed activities. attention span, so better from “Feeling the Pressure” functioning of other published in CDBS newsletter ● Use weighted clothing, reSources. a weighted cloth across sensory systems too. the lap when sitting, ● Other ideas would include heavier shoes, heavier bed hydrotherapy or water- David Brown covers when sleeping, as play (immersion in water California Deaf-Blind appropriate. The young increases pressure all over Services man you saw hanging the submerged parts of 1600 Holloway / Pacific over the swing in the the body and reduces the Plaza photograph has learned challenging impact of San Francisco, the helpfulness of increased gravity), horse riding, a CA 94132-4201 pressure sensation, and crash mat, a whole range often likes to get both his of acceptable ‘rough & Tel: 415-405-7559 arms inside his shirt so that tumble’ play, a climbing FAX: 415-405-7562 it presses tightly around his frame to swing from, and E-mail: [email protected] body. a trampoline. Because

24 • DbI Review • JULY – DECEMBER 2006 Hungarian sculpture week

Working in Clay!

A Deafblind Sculpture Week held in Lake Balaton, Hungary brings new challenges and success for all. Mary Guest joined the group

n the last few years was invited to join them at a sculpture group have become deafblind people in lovely spot at Balatongyorok in their artwork. I came back IHungary have come one of the resorts along this even more convinced as to together to work in clay 200-mile long lake, which the role which, creative arts and develop their skills in Hungarians call their ‘sea’. can play in adding joy and modeling and throwing pots Here are some pictures, satisfaction to all our lives under the guidance of a which show how and most especially to the trained potter. This summer I adventurous members of the lives of deafblind people.

JULY – DECEMBER 2006 • DbI Review •25 NETWORKS Acquired Deafblindness Network Network News Ges Roulstone Sense East 72, Church Street, Market Deeping, Peterborough, Lincolnshire PE68AL Tel: +01778-344-921 Fax: +01778-380-078 Email: [email protected] Tactile Communication CHARGE Network David Brown California Deaf-Blind Services, San Francisco State University, 1600 Holloway Avenue, Network San Francisco, CA 94132-4201, USA Tel: +1-415-239-8089 Fax: +1-415-239-0106 Bernadette van den Tillaart updates us Email: [email protected] Communication Network Jacques Souriau embers of the Tactile the deafblind and associated Tel: +33 – 5 – 49 43 80 50 Fax: +33 – 5 – 49 43 80 51 Communication disabilities field were invited. The Email: Jacques.souriau@ cresam.org Group have been requests for bookings quickly [email protected] M together in January 2006, at the overtook the limited numbers of Congenital Deafblindness in Adults Network office of Sense Scotland. The seats! The time to share was far Dominique Spriet 30 Rue Barbes first preparations were made to too short, and the seminar was F-93600 Aulnay/Bois, FRANCE Tel: +33 – 1 – 48 69 68 64 develop a product on which our a huge success. We would like Fax: +33 – 1 – 48 69 68 64 Email: [email protected] current knowledge on tactile to thank Gillian Morbey for her EDbN interaction can be shared with the significant support, and Paul Hart Ricard Lopez APSOCECAT & APASCIDE field. Sense Scotland has offered for organizing and chairing the C/ Almeria, 31 ATIC ESP-08014, Barcelona, Spain technical support, for which we seminar. Tel: +34-678-712-619 Fax: +34-678-782-600 are very grateful. We were planning another Email: [email protected] In return, 3 members of meeting and seminar in January Employment Network Seija Troyano our group have presented a 2007, but we have put it on [email protected] one-day seminar organized by hold for the moment. We will Interpreters Development Network Mirjam Leusink Sense Scotland: ‘Partners in let everyone know when we find [email protected] Latin America Network Communication – an international a new date – and check the DbI Sandra Polti perspective’. Professionals of website for details. [email protected] [email protected] Multiply Disabled Visually Impaired European Network Kent Lundkvist Email: [email protected] From left: Paul Hart, Bernadette van den Tillaart, Gunnar Vege, Barbara Nordic Culture Network Lone Poggioni Miles, and host, Gill Morbey Via G. Deledda, 19 06074 Ellera (PG), Italy Telefax: 0039 075 5179 413 Email: [email protected] Network Nancy O’Donnell Email: [email protected] Staff Development Network Pilar Gomez ONCE [email protected] Siblings Network Sabine Kersten Baal 73 B-3980 Tessenderlo, Belgium Phone/fax: +32 13 67 67 50 Email: [email protected] Tactile Communication Working Group Bernadette van den Tillaart 15175 Prairie Road South Solon OH 43153, USA Telefax: +1-740-426-6728 Email: bernadettevanden [email protected] Usher Network Carol Brill Email: [email protected] Usher Syndrome Study Group (USSG) Mary Guest Sense 11 – 13 Clifton Terrace Finsbury Park London N4 3SR UK Tel: +44 – 20 – 7272 7774 Fax: +44 – 20 – 7272 6012 Email: [email protected]

26 • DbI Review • JULY – DECEMBER 2005 Network News

Congenital Deafblindness in Adults Network

Dominique Spriet tells the story of a new centre for congenital deafblind adults in the North of France …

nce upon a time… ● 15 multi-disabled C.B.D.A., very We wish to share this few words In 1992, a small group of dependent, for whom this home with you to tell you that it can be Oparents and professionals will be a comfortable, open, a long journey (15 years since our worried about the future of their communicating place where first meeting about this project) teenaged deafblind children they will be able to share within but we have a happy end in view! created an association to reflect a deafblind community, at their It will be the start of a new journey and set up a project for their rhythm and pace. for 43 people, families and staff, children when they will be adults. This place is quite large with 43 in the small town of CALONNE By 1997, the full document residents! The reasons for this, RICOUART close to Lille, Belgium presenting the project started ● finances: if we wanted to and UK. a long journey in the different propose rehabilitation in speech, Writing this few words above, health and social departments of vision, locomotion, daily living leads me into the Congenital the French government and local skills, occupational therapy, Deafblindness in Adults Network. authorities offices. we have to be able to share This population is at the cross- Promoted by a large association competent professionals. To road of many of our thoughts (AFTAM) and after many ups and do this effectively we need a about deafblindness: language and downs this journey entered its last sufficient number of persons communication, relationship and “round”: ● and most important, we want sexual life, autonomy and mobility, In April 2006, a new residence to propose a community where staff training, relationship with the for 43 deafblind adults started to deafblind can communicate family and the community and so be built. And in the last term of easily, can have the possibility to on. After a few years, because this 2007, we will open the setting! It is choose friends and relationship field is so wide and making choices designed for among a larger group. difficult, we have decided to ● 14 quite independent deafblind concentrate on staff. We will focus persons. They will have access We aim for this place to be very on the people who are in contact to rehabilitation (language and open to the community in both daily, who are the one directly communication, work, daily ways: outside people coming in involved in working with this living skills, locomotion), so and residents participate in local group of people with congenital aiming to be able to live more life. deafblindness. In Slovakia we community based life style. It is designed to be close to had some very interesting papers ● 14 congenitally deafblind adults. the region where the deafblind presented by different countries mainly from Rubella needing people come from so that family and we will try to get the network a protected setting where and friends links will be able to to continue on this work. You are communication, work and continue. all welcome to joint in this work. community activity are the main objectives. Dominique Spriet

People from the Congenital Deafblind Adult Network and Staff Development network met and created the Congenital Deafblindness Network. Stop The first meeting of the redefined Congenital Deafblindness Network took Press! place in Scotland on the 20th-23rd November 2006. Dominique Spriet remains the co-ordinator and the contact. More next time!

JULY – DECEMBER 2006 • DbI Review •27 NetworkSubhead Newshere

The Siblings Network

Sabine Kersten reports

“People must know we exist.” families. It was the first time we organised “It is important to exchange and workshops like these, so it was still share experiences” very new to everyone. The age group we worked with “Sometimes I felt forgotten by my was between 15 – 19 years old, parents and professionals” which meant we could talk about there will be more group bonding, “It is good to have a voice to let serious issues. The emphasis was on how it is to grow up having a which makes it easier to talk about service providers know that we sibling with special needs. these personal issues. exist and that we need services We discussed questions like: The answers show that there is and support as well” a need for support for siblings. ● How would you describe your relationship with your sib? Organisations offerering services “We have an important role in to families have a responsibility ● Is your outlook on life different the development of the deafblind towards the whole family, and it from your friends’ outlook on child” is time that they recognise this life? How? responsibility. “We feel the pain they are feeling ● Do you think being a sib has The Siblings Network affected your personality? How? and are hurt just as much as our is independent from any parents” ● What are some good parts of organisation, which means we having a sibling with a disability? have no funding. Having no money These are just some of the ● What are some not so good at all means it is very difficult answers to the question: Why is parts of having a sibling with a to get together. Several people it important to offer support to disability? suggested we could use email, or siblings of children with special We managed to talk about these an internet group to stay in touch needs? personal questions, even though and share experiences. But how I asked this question to a group we had some language problems many people feel comfortable of siblings participating in the to deal with. discussing very personal issues over family event “Listen to me” in This time we did not organise the internet? Salou, Spain. During this week the any “fun” activities for the group, Another big issue for us is Siblings Network organised four but based on the feedback we language, of the younger siblings workshops for the borthers and received I am sure we will do so the majority do not speak English. sisters who came along with their during the next event. This way We will stay optimistic, we came home with new inspiration and ideas. We are already thinking about our next meeting! The next family event “Listen to me” will be in Scotland (probably in 2008) and we will definitely be there. It would be great to have a meeting next year, but as I have said before: it all depends on money… If you would like more information or if you would like to help us to meet again you can contact me at: [email protected]

28 • DbI Review • JULY – DECEMBER 2006 Network News

CHARGE Syndrome Network

he network continues to be population of people identified a small, but international, with CHARGE Syndrome continues Tgroup of individuals to age we see a new emphasis connected by a listserv, who at these meetings, with more of also organize CHARGE events a focus on educational issues, at various larger meetings and behaviour, and possible late-onset conferences around the world. complications. The website of the This year has seen a plenty of CHARGE Syndrome Foundation events! We have had a three-day (www.chargesyndrome.org) has meeting about CHARGE, held in St useful links to other CHARGE Louis Missouri, that also attracted organizations around the world. delegates from Kansas and Illinois. There you will also find information There has also been a first ever about the next International Nordic CHARGE Conference in CHARGE Syndrome Conference Finland, the 7th Australasian which will be held in Costa Mesa, Nicholas. Anyone wishing to CHARGE Conference, a CHARGE California, in July 2007. attend and present at that meeting Focus Day included in the 7th At next year’s DbI World should contact Tim by email at Canadian Deafblind Conference in Conference in Perth the CHARGE [email protected] Winnipeg, and a CHARGE Canada Network meeting will be organized conference held in Toronto. As the by Tim Hartshorne and Jude David Brown

Communication Network

Jacques Souriau

ere we are! The first 6 students are enrolled in this and a collaborator of VIATAAL is European Masters degree programme which started at the the key person in this project. The Hentitled “Communication beginning of October. They already communication network members and Congenital Deafblindness” is have implemented the first part of organised the content and give on its way. Thanks to the University the course and in a few days, they the lectures, but without Marleen, of Groningen (and with the help will have to work on their research nothing would have been possible. of the European program EQUAL), and thesis. They all come from The students are very motivated. the Netherlands Some have already a good except one from experience of deafblindness, others Germany. This worked with other disabilities is a first try and and one never had any practical we do hope experience. But they all are equally that in the next engaged and interested. year they will We are all looking forward for be people from the new developments that will a variety of emerge from this first project. countries. Marleen Jacques Souriau Janssen, Professor at Contact Marleen Janssen on the University [email protected] of Groningen (See page 63)

JULY – DECEMBER 2006 • DbI Review •29 NetworkSubhead Newshere

Usher Study Group

Mary Guest reports

is encouraging. looking at the lives of people with A major cost to cover is Usher. People with Usher syndrome translation from English and for are found in most countries, Usher interpretation between English and is a global condition. Wherever the Slavic languages used which you travel people with Usher have must be done to a high standard if similar stories to tell, this common ne of the outcomes from we are to achieve quality learning experience can be used to help the last meeting of the and exchange. reduce the isolation and feelings OUsher Study Group If anyone with connections in of helplessness among people with in Presov in Slovakia in 2005 Eastern Europe can advise on Usher wherever they happen to be was to hold a workshop on obtaining funds for translation living. Usher for countries in Eastern and interpretation please contact During the USG we plan to look Europe but through the medium [email protected] and/or at, setting up and working with of a Slavic language rather than Hanna Siedlecka groups, maintaining e-groups, English. This could involve Ukraine, For an update on Usher what is happening in medical Poland, Slovakia and others such Workshop-Eastern Europe, please and genetic research, working as Lithuania who shares a similar contact me. with parents and working in the language base. Since then I have classroom. been in discussion with Dr. Hanna World Conference, Perth, The Usher Study Group usually Siedlecka an audiologist from Sept 2007 attracts a cross section of Poland about holding an Usher professionals and people with The group working with people Workshop in Warsaw in 2007. Usher from around the world. We who have Usher in Western To get this to happen we need try to keep the numbers attending Australia have contacted us about countries who want to develop to around 35 as we find that this holding an Usher Study Group their work to both provide funds encourages robust exchange and event just prior to the World DbI for ‘students’ to attend and help stimulates learning. Conference. If it is agreed we plan implement new practice in their to hold the USG for a day and a respective countries. Hanna has For further information about half from Monday 24-Tuesday 25th had some early discussions with the proposed Usher Study September in Perth. the Polish Deafblind Association Group contact: mary. We want to take the theme ‘out who have said that they would [email protected] of isolation’ and weave that into like to give some support, which Tel: +44 (0)208 272 7774.

RubelIa Network Join us!

n March, 2005, the Helen Keller efforts, issues in education, late group has established its goals, National Center for Deaf-Blind onset medical manifestations, which can be viewed on the IYouths and Adults (HKNC) areas of current research and website. hosted an International Symposium the need for collaboration and on Rubella at its headquarters in further research. At the end of the For more information about this New York. Representatives from symposium, the group developed exciting new network, please twelve countries participated an action plan which included an contact Nancy O’Donnell at the in 2 days of presentations and application for create a Rubella Helen Keller National Center, 141 discussions regarding the history of Network in DBI. This network was Middle Neck Road, Sands Point, rubella, worldwide immunization approved in July 2006 and the NY 11010 US [email protected]

30 • DbI Review • JULY – DECEMBER 2006 Network News

EDbN Lucy Drescher and Ursula Heinneman report

he EDbN steering group took group we discussed the constitution and the membership the opportunity to meet constitution and membership application form will be also Trecently at the European arrangements for EDbN, to make available on the EDbN website and Family Conference 2006 “Listen to sure that they reflect the needs of on the DbI website. me 3” in Salou / Catalonia -Spain. the group as it is now. As a result a Another EDbN development is The conference also gave the new constitution has been drafted that Sense and Lega del Filo D’oro group the opportunity to talk to and the membership arrangements are planning to jointly fund a deafblind people and their families have been amended. All deafblind person to work for Sense, Lega del about what EDbN is and what it people, family members and Filo D’oro and EDbN in Brussels. does. professionals who are interested This person will work a few hours As part of the conference Lucy in campaigning to bring about a week and will be helping us to Drescher did a presentation about recognition of deafblindness in monitor policy developments and lobbying in the European Union Europe are welcome to join EDbN. possible funding opportunities. and encouraged the families and There is no restriction on the They will also be helping to raise deafblind people attending to number of people who can join the profile of deafblindness in the get involved in the EDbN and the from each other country, which European Union, to make sure campaigning work we are doing. is a change from the previous the needs of deafblind people EDbN is now a network of arrangement. Members are not are included in all relevant policy deafblind people, family members required to pay a membership fee making. and professionals that concentrates but the work done by EDbN does Please do join us and get involved a large amount of its effort on rely on people and organisations in making sure that deafblindness is campaigning in addition to the making time and funding available. recognised in Europe. sharing of information and support The new constitution will be sent that has always been its role. out to people soon with the new At the meeting of the steering EDbN membership application. The

Steering group members Lucy Drescher, Ricard Lopez and Ursula Heinneman at the conference in Salou

JULY – DECEMBER 2006 • DbI Review •31 NetworkSubhead Newshere

Network Seminar – Acquired Deafblindness

Participation

DBN held its 5th organisers believe reflects the deafblind. international seminar growth and understanding Dr Claes Moller, an expert Ain Groningen, of Acquired Deafblindness in Usher Syndrome, gave Netherlands from 1ST - 5th among professionals and a powerful lecture on this November 2006. A total an acceptance of the need subject, followed by 4 people of 168 delegates from 13 for greater sharing of with Usher who described countries attended all or part experiences and best practice their experiences of living of the event, making it the in this field. with and overcoming the biggest of all the seminars. The theme of the barriers imposed by the This marks a growth in seminar was “The Art of Syndrome in order to live attendance at each successive Communication – Creating active and fulfilled lives. event, something which the Solutions on the Individual, Other plenaries covered the Lex Grandía Societal and Professional emerging mobility benefits Level – the World of Acquired of GPS technology for people Deafblindness”. Delegates who are deafblind and a heard a range of plenary report on the 5 year Nordic talks delivered by deafblind Project, which tracked the professionals about their experiences of people with personal experiences of living deafblindness in Denmark, with deafblindness and also Norway, Sweden and Iceland. had advice and guidance for The conference finished sighted-hearing colleagues with advice on how to on how best to communicate work with legislators and with people who are municipalities to achieve the

32 • DbI Review • JULY – DECEMBER 2006 Network News

Interpretation…

Discussion…

Concentration… Sensation… services that people with on the subject of the Seminar. deafblindness are entitled to The Dutch organisation, or deserve. Visio, kindly hosted the In addition to the 6 plenary event. Preparation will sessions, delegates chose commence next year for the from 16 workshop topics and 7th international seminar of were entertained at the start ADBN, which will take place and finish of the Seminar in Bergen, Norway in Autumn by the Feelgood Theatre 2008. Company. They performed pieces written by a deafblind Ges Roulstone Ges Roulstone playwright that were Chair, ADbN and Chris designed to prompt debate 9.11.06 Chapman

JULY – DECEMBER 2006 • DbI Review •33 ListenSubhead to hereMe – conference

Ricard Lopez reports:

he 6th European Conference of Families with Deafblind Children took place from 1st – 6th October 2006 in TSalou, Catalunya, Spain. Families and numerous professionals came from all over Europe and enjoyed highly quality lectures given by the best speakers in their filed. The conference was very well looked after at the Cala Font Hotel where the staff treated us like friends and the comfort of the hotel and the beauty of the location helped us all to unwind. The City Council in Salou supported the conference planning and we thank them for their practical help and advice. During the week we discussed many themes that families had chosen: residential and occupational centres, vocational training, sexual education, cochlear implants and hereditary retinal disease, labour opportunities and projects at the European level.

34 • DbI Review • JULY – DECEMBER 2006 Listen to Me – conference

Forty volunteers and mediators from APASIDE and APOSCECAT designed a fun programme for the children and young people attending and supported them in lots of activities – including participation at the conference! For the very first time the Siblings Network met together and enjoyed a programme of organised workshops for brother and sisters to take part in. The conference called for imaginative change in Spain. Angel Sanchez, general Chairman of ONCE proposed the creation of a new “Deafblind Foundation” which would be supported by all the Spanish deafblind groups. Ricard Lopez, Chair of the conference asked for financial support for the creation of two new centres for Deafblindness – in Sevilla and Barcelona. Navidad Enjuto, confirmed that deafblindness would be recognised in the law. The Conference achieved a perfect blend for both families and professionals. Blessed with wonderful warm weather, Catalan hospitality and an excellent programme this was an event to be remembered!

Thanks to APACIDE, APOSCECAT and EdBN

JULY – DECEMBER 2006 • DbI Review •35 Network News

Nordisk Kulturforbund for Døvblindfødte The Nordic Culture Network

Lone Poggioni

Congratulation on the first idea was as good as expected! be created and it should be 10 years! In fact, back in Denmark, the run by a Board consisting of 2 planning of the first course representatives from each of the started at once. There were so his very successful initiative Nordic Parent Associations. many things to do – find the right was taken 11 years ago by a ● to offer more courses to place to hold the course with small group of people from congenitally deafblind adults the T good accommodation for the Denmark, Sweden and Norway following years. deafblind people - engage good during the World Conference in Now 10 years later it gives a and motivated artists as teachers Cordoba, Argentina. great pleasure to look at some - find a person to take care of all They had an idea of offering statistics. practical matters! But – first of all cultural activities to congenitally In 2006 there were three courses – a lot of money should be found! deafblind adults from all the Nordic – one in August in Sweden, one The group succeeded with all countries. The deafblind person in Norway in September and one this, so in August 1996 the first 6 should have the opportunity in Denmark in October – with a deafblind adults – 2 from Denmark, to work with, and develop, total of 32 deafblind adults and 52 2 from Sweden and 2 from Norway creative talents, thus giving him helpers. – went to the Swedish town Visby or her opportunity to learn, During the 10 years 37 on the island Gothland for a week experience, express himself and courses have been held with long sculpture course. to communicate with the outside 232 deafblind adults and 430 The idea offering courses to world in a new and different way. helpers participating from the congenitally deafblind adults with In 1995 these thoughts were Nordic Countries. They have a real artist in charge was really very new, but the group were attended a sculpture course, in a brilliant idea, so two important convinced that it was a good idea, dance and drama, in “Music as things were then decided: so they decided to develop a pilot communication” or in nature ● a Nordic Culture Network should project to evaluate whether the sculpture. Behind such a success there are lots of people, who have done a marvellous job, and I would like to take the opportunity to say thank you so very much to each of them and to dedicate this celebration to these wonderful people.

STOP PRESS!! The Deadline for the receipt of abstracts for the DbI World Conference has been extended to 31st January 2007! Start writing now and register at www.dbiconference2007.asn.au

36 • DbI Review • JULY – DECEMBER 2006 Conference

Welcome to The 6th EBU Deafblind Conference

“ Deafblindness: Equality and Diversity “

and

The 2nd EDBU General Assembly

5 – 10 October 2007 Four Points Panorama Hotel, Zagreb, Croatia

More information coming up!

Croatian Association of Deafblind Persons “DODIR” GSM: +385 91 8981313 E-mail: [email protected]

JULY – DECEMBER 2006 • DbI Review •37 WinnipegSubhead here conference

Those Canadians can really put on a conference, eh!

A report from Stan Munroe and photographs by Amanda Newberry

e did it again! who couldn’t attend…it’s The Plenary Speakers On the heels of a pity! But watch for the made their marks as well. Whosting the last DbI conference website to obtain They included Paul Hart World Conference (August the Proceedings. from Sense Scotland, David 2003 in Mississauga, Ontario), His eminence grise William Brown from California, Dr. Ed the CDBRA is proud to boast Green was our Keynote Hammer from Texas and the another conference success. speaker for the Opening teamwork of Tina Prochaska We salute the great success of and Closing Sessions. He and Carol Robbins from “Celebrating Potential” – The performed as an Entertainer, Tennessee. During Focus 7th Canadian Conference Artist and Professional Day, Dr. Sandra Davenport on Deafblindness which was Motivational Speaker during lectured on issues related to held in Winnipeg, Manitoba, these key times. He learned Acquired Deafblindness and September 21-24, 2006. to paddle a canoe without a Meg Hefner led discussions The Conference was canoe and became an expert on CHARGE Syndrome. attended by 140 people at beer-can chicken. In all The Opening Day Panel primarily from within seriousness, William made Discussion by individuals with Canada, but a few a huge contribution to the deafblindness from across participants represented success of our conference and Canada was particularly Australia, Italy, Scotland and was very popular among the enlightening. Hats off to the United States. For those participants. No surprise, eh! Wayne Turnbull from Calgary,

38 • DbI Review • JULY – DECEMBER 2006 Winnipeg conference

Jane Sayer from Winnipeg, and Into the Spotlight, CRS Karen Esmail from Toronto – What’s going on? and Chantelle McLaren from The food was excellent, Hamilton for their deeply the presentations top rate, personal discussions. the entertainment superb These persons mentioned and the organization by the above were not meant to Manitoba Chapter of CDBRA overlook the additional was second to none. presenters who led 28 other Nobody left the conference workshops presented over unhealthy, unwealthy or two-days. The topics included unwise. Watch for CDBRA such titles as Transition, again as we plan for the 8th Siblings-Their Perspective, Canadian Conference on Intervenor Competencies, Deafblindness. Don’t miss it! Stepping Out of the Shadows

JULY – DECEMBER 2006 • DbI Review •39 RomaniaSubhead hereEducation Programme

Romania Education Programme

n 1999, when Sense is the demand for support of the teachers who went International started that Sense International on to specialise in teaching Iworking in Romania, there (Romania) saw its role as a deafblind children. were no services for deafblind facilitator of change rather With enormous support children whatsoever. There than a long-term service from a number of individuals was very little knowledge provider. So it was decided based at Sense UK and or understanding of from the outset that we other British agencies, we deafblindness in the country, would work closely with the developed an in-service not least amongst the RMER to ensure that together teacher training programme authorities, who claimed we developed the necessary made up of two week- there were no more than in-country expertise. This long training sessions, three deafblind people living would mean that the incorporating practical in the country. Seven busy Romanian authorities had experience and mentoring years later, we are delighted a real sense of ownership support from specialists to be sharing our experiences of these new education in deafblindness between of building up an innovative initiatives for deafblind the two sessions. This education programme for children and would take programme has now run deafblind children, and in on responsibility for further twice, training a total of particular in developing an developments in the future. 60 in-service special needs in-service teacher training We began by entering into teachers in skills for teaching programme in partnership a formal partnership with the deafblind children. During with the Romanian Ministry Ministry of Education, and the second round of training, of Education and Research ran a number of workshops two teachers who were (RMER). for School Inspectors, Head trained in the first round From the start, we did not teachers and civil servants were supported to deliver want to simply set up, fund, in the RMER. This meant sessions alongside specialists and run education services that senior decision-makers from the UK, the RMER and indefinitely, as we felt that became fully aware of the University of Cluj. This this was not a sustainable deafblindness and ways gradual transfer of expertise way of ensuring that in which education can be to Romanian education deafblind children received made accessible for deafblind professionals culminated in a the education and support to children. It also meant that Training of Trainers session in which they had a right. Such they were fully supportive March 2006, in which eleven

40 • DbI Review • JULY – DECEMBER 2006 Romania EducationSubhead Programme here

teachers were awarded a range of additional areas of the country, and ‘National Trainer’ status by services including a Resource so alongside our support the Ministry of Education Centre in Cluj and an Early to a Teachers’ Network, we and were accredited by the Intervention Support Service have secured funding to University of Cluj. This means in Bucharest. Twelve of develop a peer mentoring that in future years, new the fourteen units are fully programme, whereby more national specialists will be in funded by the government. experienced teachers will a position to deliver training The teacher training undertake learning exchange to younger generations programme was made visits to offer practical of teachers. Whilst this possible by CfBT, who classroom support and approach was not without funded this unique initiative advice on good practice to its challenges, by investing in from 2002-2006. At the newly-trained teachers. We local expertise and working end of the project period, will also continue to develop alongside the RMER, we are an external evaluation was our training materials, and confident that education commissioned. To read the ultimately hope to adapt the for deafblind children is full report, please do visit programme for replication in now firmly embedded in the the DbI website at www. other areas of the world. national education system. deafblindinternational.org Alongside this teacher Whilst the evaluation report For more information, training programme, the notes our success in working contact Cristiana RMER has established with the RMER to develop the Salomie (Director, Sense fourteen deafblind education first ever training course of its International (Romania)) at units across Romania since kind in Romania, developing [email protected] 1999, of which the first two local expertise, and or Julia Peckett (Programme units have become ‘centres embedding deafblindness Officer, Sense International) of excellence’. In partnership within the education system, at julia.peckett@sense with Sense International it also highlights areas international.org.uk (Romania), these first two for follow-up. Many new units have also developed teachers work in isolated Cristiana Salomie

JULY – DECEMBER 2006 • DbI Review •41 SubheadConditions here associated with deafblindness

Conditions Associated with Deafblindness Stickler Syndrome

What is Stickler Syndrome? ● COL11A2 causes a ‘Stickler-like’ It is a genetic progressive condition, syndrome, which affects only the joints which can affect both sexes and is and hearing with no eye problems. normally passed on from parent to This condition has now been given the child. It affects the body’s collagen name Oto-spondylo-megaepiphyseal (connective tissue) which is the most dysplasia (OSMED). plentiful protein in the body - about In a fourth group the genetic cause is one third of all our protein is made up yet to be determined. of collagen. Collagen forms a major part of connective tissue, which can be Why Stickler Syndrome? described as the supportive tissue of the Stickler syndrome is named after Dr organs of the body. Some connective Gunnar B Stickler. In 1960 a twelve tissue acts like a glue or binding, in other year-old boy was examined at the areas it acts like scaffolding, and can Mayo Foundation in Minnesota, USA. also allow for the elastic stretching and The boy had bony enlargements of tightening, especially in the muscles. several joints and was extremely short Collagen is also an important part of the sighted. His mother was totally blind. cartilage which covers the bone ends of Dr Stickler discovered that there were the joints. In the eye it is found in the other members of the family with similar sclera, cornea and vitreous humour. symptoms, the first family member Several genes which control and direct having been seen by Dr Charles Mayo collagen synthesis (the building up of in 1887. This prompted Dr Stickler to complex substances by the joining and study the family. With colleagues he interaction of simpler materials) may worked to define the condition, the cause Stickler syndrome. results being published in June 1965. ● COL2A1. This gene is responsible Dr Stickler tentatively named the for Stickler syndrome in the majority condition heritatary progressive Arthro- (about 75%) of people diagnosed with Ophthalmopathy known world-wide as the condition. It causes ‘full’ Stickler Stickler syndrome. syndrome (including joint, hearing, eye and cleft abnormalities) and has been Who is affected? classified as type 1 Stickler syndrome. Not all symptoms need be present One in 10,000 persons may be affected from birth, some may manifest later. by Stickler syndrome. Some medical professionals believe that as many as 3 in Two other genes are now also known 10,000 persons are affected, but further to cause some of the features of Stickler research is needed to confirm this. As an syndrome. inherited condition, Stickler syndrome ● COL11A1 again causes ‘full’ Stickler is normally passed from parent to child. syndrome including joint, hearing, eye There is a 50% chance of children being and cleft abnormalities, and has been affected in this way although there classified as type 2 Stickler syndrome. are some recorded cases where it has occurred for the first time in a child.

42 • DbI Review • JULY – DECEMBER 2006 Conditions associated with deafblindness

How does it affect a sufferer? Management of the condition The symptoms and severity of Stickler Once Stickler syndrome is diagnosed, a syndrome vary from patient to patient, co-ordinated multidisciplinary approach even within a family, and can be is desirable. This should include: difficult to diagnose. There is a range of ● Ophthalmic assessment. Due to the treatments and support available. With high risk of retinal detachment, all this help it is possible to learn to live patients also require long-term follow within the limitations of the condition. up and are advised to seek ophthalmic help if they see new floaters or What are the symptoms? shadows in their vision. Eyes ● If there is evidence of midline clefting, Short-sight (myopia) a maxillo-facial assessment. High risk of retinal detachments, which ● Hearing tests and management may affect both eyes. of combined conductive and Cataracts sensorineural . Glaucoma ● Joint hypermobility should be assessed ● Rheumatological assessment and Bones and Joints follow up is advised in older patients Stiff joints and over-flexible joints who may benefit from physiotherapy for arthropathy. Early joint disease leading to osteoarthritis in later life ● Children should be educationally assessed. Although intelligence is normal, patients of school age Mouth may face considerable educational Cleft palate, submucous or high arched difficulties because of combined visual palate and/or bifid uvula and auditory impairment and these Micrognathia – where the lower jaw is needs should be met. shorter than the other resulting in poor contact between the chewing surfaces With thanks to the Stickler Syndrome of the upper and lower teeth. Support Group – based in the UK. The website provides links to lots of groups across the world www. Possible hearing loss sticklersyndrome.org.uk Glue ear in childhood caused by cleft palate

Other symptoms These may include curvature of the spine (scoliosis)and mitral valve prolapse

JULY – DECEMBER 2006 • DbI Review •43 SiblingsSubhead here

International Program Models for siblings of children with disabilities

Sheri B. Moore, Associate Professor at University of Louisville, Kentucky, USA discusses the challenges facing siblings with disabled brothers and sisters and provides an excellent section with useful material and references.

here are many in how siblings deal with challenges for parents the above mentioned Tas well as siblings of challenges. Some siblings children/youth/adults with take the situation in stride dual sensory impairments and manage to maintain or deaf blindness. Often a lifestyle similar to that the needs of our children of their peer group. Other who have dual sensory siblings have told me that impairments take much they have missed part of their family time and energy. This youth and numerous social frequently means that less and related opportunities time, attention and effort with their peer group can realistically be devoted to because of the direct or the siblings of the disabled indirect needs of their person. These siblings are disabled sibling who has dual often expected to be more sensory impairments. Sheri B. Moore independent earlier in The professional literature life than their peer group. on siblings of children/ Additionally, siblings often parent/s. They often also youth/adults with disabilities have more autonomy and need additional information echoes many of these more responsibility because to better understand the themes and challenges. For of the care needed for a disability of their sibling example, a journal article sibling with disabilities. The along with the implications by Heller, Gallagher and siblings may have difficulty for care and education. Frederick (1999) specific understanding the parental Siblings sometimes have to siblings of deaf blind demands that children and the additional challenge of individuals, reported on a youth with dual sensory spending a great deal of time survey of parent of some 35 impairments necessitate. assisting in the care taking children with deaf blindness. Often, the needs of the of the sibling. This may This survey reported that siblings are downplayed cause resentment towards often the relationships because of the time, stress the sibling as well as the of siblings consisted of and physical demands of parent/s. Siblings need to unequal roles, with siblings caretaking. also understand the long taking too much care taking In my own work with term implications of the responsibility. Another article sibling groups of children disability; this too can create by Banta (1979) discusses the with dual sensory stress and or resentment effects of a deaf blind child impairments, often siblings if a care taking role is to on the family and siblings, will stress that they need be assumed by the sibling. and identifies questions more one on one time or However, there is great and concerns for additional individual time with their variation, in my experience, research. Further, a recent

44 • DbI Review • JULY – DECEMBER 2006 SubheadSiblings here article by Australians Ross inclusion of students with not specifically designed and Cuskelly (2006) specific disabilities in schools and for the siblings of children to families of children with society, there should be a and youth and adults with autism spectrum disorder corresponding lessening dual sensory impairments, (ASD), notes that siblings of of uncomfortable issues there is value in studying children with ASD exhibit/ related to disabilities. On the Sibshops materials by express more problem the humorous side, the Donald J. Meyer of the behaviors and experiences New York Times article had University of Washington in than do children in families a response from a disabled Seattle, Washington, USA. where all children develop young person with autism. Sibshops: A Handbook for typically. So, this study Her comments were in the Implementing Workshops specific to ASD is of concern vein that she had typically for Siblings of Children with because of the increased developing siblings that Special Needs is a product of potential of risk for siblings weren’t so easy to live with a project involving 8-13 year developing and internalizing either (Kassiane Siblen, old siblings of children with their own adjustment Missoula, Montana). Kassiane disabilities. Many suggestions problems. The article also concludes, that disabled are given regarding programs comments on the need should have equal time in for the siblings. Some for further research and griping about their siblings of the challenges that investigation. An interesting – so much for sibling rivalry! siblings face are reviewed, article in the New York Times including resentment, on April 4, 2006 was entitled, An estimated over identification, and Siblings of Disabled have “ embarrassment. Guidelines Their Own Troubles, authored seven million for implementation of by Gretchen Cook. The article activities for both siblings notes that an estimated typically developing and interaction with their seven million typically American children parents are included. developing American children These Sibshop materials have siblings with disabilities have siblings with were used recently as a and that these siblings model for an inaugural often face similar positives disabilities and that program for siblings and challenges as their of individuals with parents. Specifically, some these siblings often deafblindness by Sabine of the siblings felt neglected Kersten in Spain in Fall 2006. by their parents who had face similar positives Sabine reports that the demanding caretaking Sibshop materials were used responsibilities and also and challenges as and were helpful in working resented extra demands their parents with the siblings of deafblind placed on them by the needs ” individuals at the Spain of their sibling. Importantly, meeting. Clearly, there is a the article quotes Donald There are however, familial need for the development of Meyer, developer of Sibshop and cultural variations more programs and offerings materials, that many of to the articles presented. for siblings. Much remains the siblings will have the Generalization cannot be to be accomplished to better longest lasting relationships made relevant to individual meet the needs of siblings of anyone – some in excess families and their specific and families who have a of 65 years. Concludes Mr. familial and sibling related deafblind individual within Meyer, the siblings should be needs. For practitioners, each their family unit. Sabine remembered in all contexts family should be approached Kersten from Belgium has relevant to their sibling with their individual needs developed a site, Siblings with a disability. The New and situation in mind. Network, on the Deafblind York Times article makes the Families and siblings should International website. Go to: interesting point that with be asked how their needs can www.deafblindinternational. the advent of increased best be addressed. Although org and the sibling network

JULY – DECEMBER 2006 • DbI Review •45 SiblingsSubhead here

page for further information. to deafblindness. There website is: www.siblings. Email: siblingsnetwork@gmx. has also been frequent it/english/bibliografia/index. net, as listed on the site, mention of the needs htm and contains some to register your interest in of siblings at Deaf blind additional material of the development of more International conference/ interest. Information on programs and opportunities events. Additionally, looking a Sibling Support Group for siblings. Along with an at international models, a meeting in Tokyo in 2001 email to Sabine, please also bibliography is posted on the ( not specific to deaf copy sheri.moore@gmail. website of the Italian Downs blindness) is given, along com with your email to Syndrome Association (AIPD) with pictures, at the website: Sabine; I am interested in with books and references http://homepage2.nifty. obtaining more information in Italian journals/books and com/togarasi/sibshopintokyo/ on groups for siblings related also offerings in English. The sibshopintokyo.html.

References: Banta, E., Siblings of deaf-blind children. Volta Review v81 n5 p363-69, September 1979. Cook, G,. Siblings of disabled have their own troubles New York Times, April 4, 2006. Heller, K and Gallagher, P. and Fredrick, Journal of Association for Persons with Severe Handicaps, L v24, n1 p33-43 Spring 1999. Meyer, D. J., Sibshops: a handbook for implementing workshops for siblings of children with special needs. University of Washington, Seattle, WA.

List of other useful materials The author and the Perkins School for the Blind Research Library are hopeful that you will find this material helpful in learning more about siblings of deaf blind individuals. There is a very full and detailed list on the DbI website in the Siblings section. Do look!

The brothers Prouty/Prouty, Bill News from Planning for the future: An adult siblings’ Advocates for Deaf-Blind, v.7, n.3; pp.6-8. suggestions, p.8. Special Education Service Winter 2003. (Journal article) Agency (SESA), Spring 2003 from http://www. California Deaf-Blind Services fact sheets/ sesa.org/newsltr/ref siblings/sibtoc.html California Deaf-Blind Services School-based strategies/Powell, Thomas H California Deaf-Blind Services, 2004. 50+ pp., http://www.sesa.org/newsltr/ref siblings/sibtoc. unnumbered (www.sfsu.edu/~cadbs) html The strength of siblings, p.9. Special The strength of siblings/Smith, Julie. From Education Service Agency (SESA), Spring 2003.) http://www.sesa.org/newsltr/ref siblings/sibtoc. Downloadable from http://www.sesa.org/newsltr/ html ref siblings/sibtoc.html Tall tales – short stories Sense Scotland, 1995. Reprinted from Disability Solutions: www. ISBN: 0 9526697 0 6. 218 (Book) disabilitysolutions.org Under the magnifying glass: Sibling support Brothers and sisters: Strategies for supporting in Deafblind Focus, v.13, n.3; pp.1-2. Winter siblings of children who are deaf-blind/Kenley, 2003. Website: http://olrs.ohio.gov/ASP/olrs Jackie; Medina, Myrna. reSources, v.10, n.14; Siblings.asp pp.5-6. Fall 2002 (also in Spanish) The UPLIFT Educational Series: Siblings/UPLIFT Meeting the unique concerns of brothers and from http://www.sesa.org/newsltr/ref siblings/ sisters of children with special needs/Meyer, sibtoc.html Reprinted from UPLIFT Educational Donald http://www.sesa.org/newsltr/ref siblings/ Series: www.upliftwy.org sibtoc.html Reprinted from The Sibling Support Project website: www.thearc.org/siblingsupport Perceptions of parent-child relations by Author Contact Information: Dr. Sheri B. parents and siblings of deaf-blind children/ Moore, Associate Professor, College of Education, Banta, Elizabeth. Doctoral dissertation. Room 153, University of Louisville, Louisville, KY USA 40243 The brothers Prouty/Prouty, Bill CHARGE Accounts, v. 12, n.4; pp.2-4. Winter 2002. Email: [email protected]

46 • DbI Review • JULY – DECEMBER 2006 SubheadPublications here

“Communication and congenital deafblindness”

The fi rst booklet is ready

“Congenital deafblindness and the the English version of the core principles of intervention”, booklet and subtitles on de the fi rst booklet and DVD DVD into another language. out of a series of four titled The titles of the following “Communication and congenital booklets and their date of deafblindness” is ready. The availability is as follows: booklet is written by Inger Rodbroe and Marleen Janssen. 2 Social interaction and The fi rst part of the booklet contact contains detailed information Ready in January 2007 about the disability, the recent population, and an introduction to 3 Communication based on non- the core principles of intervention, conventional “signs” yet. Please send an email to which will be elaborated in the Ready in October 2007 centrumvoorexpertise@viataal. following 3 booklets. In the second nl to show your interest and you part of the booklet you fi nd the 4 Communication based on will receive an email with the exact DVD and a guide to the video conventional “signs” address where to order as soon as illustrations. Ready in June 2008 this is known. The target group of these The price of the booklet will booklets is the network around Where to order be about 15 euro plus costs for each congenital deafblind child The booklet “Congenital administration and sending. and adult. For parents a special deafblindness and the core Do also send an email message edition of each booklet will be principles of intervention” when you are interested in the written. When these are due is not can be ordered at Viataal, the translation cd-rom. decided yet. The booklet is written Netherlands. The negotiation with in English. the organisation that is going More information about this At the moment a cd-rom is in to take the orders and send the project can be found in the DbI production with all information booklets is not completely fi nalised Review no 37 (January – June and instruction needed to translate 2006), page 43.

Tactile signals for working with computers

The signals are intended to give This CD ROM was produced by deafblind people, guides and Devefi lm for: interpreters a tool to use when Danish Association of the Blind. communicating via . Kloverprisvej 10B Using these signals, tactile 2650 Hvidovre, Denmark communication can become more Tel: (+45) 3675 2096 fl exible and working postures can Text Tel: (+45) 3648 5096 be optimised. Web: www.fddb.dk

JULY – DECEMBER 2006 • DbI Review •47 Khyran treads the Boards!

Khyran treads the Boards!

Keith Park writes original material and adapts literary classics to enable children to work together in the creative cauldron of the theatre! He is completely committed to making theatre accessible and bringing all children together with professional actors to have fun!

The Actor Khyran is 11 years old and moved from his primary school to a secondary school in Lewisham – a district in inner London, in September 2006. He has a significant dual sensory impairment. Over the last year Khyran has been participating in an inclusive drama project with a local mainstream school. The staff and pupils of both schools hope to show by this account that enjoyment of the creative arts is irrespective of disability and sensory impairments.

The Theatre Shakespeare’s Globe Theatre, London – on the banks of the River Thames

A group of pupils from two schools, special and mainstream participated in a series of workshops on ‘Twelfth Night’ using the Globe Theatre. They were on stage for an hour a week for four weeks and performed an interactive version based on one of the characters in the play and called Malvolio’s story. For those readers who don’t know the play, Malvolio is an unpopular steward in the house of the Lady Olivia, who gets a cruel trick played upon him that makes him wrongly believe that Olivia is in love with him. Malvolio is publicly humiliated and vows revenge but the others finally ‘entreat him to a peace.’ The following extracts of original text are all performed in “call-and-response”. (This means that one person calls out the line that is then repeated by everyone else.) This method quickly establishes a communicative atmosphere in which pupils (and staff) are encouraged to participate in any way they can: speaking, signing, clapping, stamping, rocking, and so on.

The Play Episode1: Maria, the maid, That all that look on him Episode 3: Malvolio finds explains that Malvolio thinks Love him a letter. It was written by everyone likes him, when in Oh yeah right! Maria, but made as if to look fact it is quite the opposite: as though it is from Olivia, Episode 2: Maria and others telling Malvolio of her love Oh Malvolio! follow Malvolio around the for him, especially when he He is a kind of puritan garden calling him names. dressed up in yellow: It is his grounds of faith After the word ‘sheep-biter’ everyone bleats like a sheep! My lady loves me Yellow stockings! Here’s an overweening Cross-garter’d! rogue I thank my stars Fie upon him, Jezebel! I am happy Turkey-cock! I will smile Fire and brimstone! What a dish of poison! Bolts and shackles! Out, scab! Sheep-biter! Baaaaa!!!

48 • DbI Review • JULY – DECEMBER 2006 Khyran treads the Boards!

Episode 4: Malvolio dresses Episode 5: finally, Feste the up and goes to Olivia. He clown explains that it was all starts to flirt with her, and a cruel joke. Malvolio swears she – not having any idea of revenge but the others try to what is going on – screams persuade him to make peace. the place down. And thus the whirligig of Be not afraid of greatness time Some are born great Brings in his revenges Some achieve greatness I’ll be revenged Some have greatness On the whole pack of you Thrust upon them Entreat him to a peace Yellow stockings!? Peace Cross-garter’d!? Aarrgghh!!

The episodic sequence of verse makes the script easy to learn and many of the children learned all the text, and the key signs from British Sign Language that were used with the script, very quickly. As they did so, they took over the workshop and ran it themselves, and the staff became observer-participants.

The Theatre The Churchill Theatre The Churchill Theatre in Bromley, Kent kindly invited groups of pupils from various local schools to take part in a pantomime project. Over the Christmas period, the professional pantomime ‘Cinderella’ was running at the Churchill, and so in early January 2006, Khyran and his group had 3 one hour workshops on stage doing an interactive version of Cinderella. They were surrounded by all the props and the wonderful backdrop, that showed a glittering magical castle. Like all pantomime scripts, the interactive ‘Cinderella’ was extremely silly and great fun was had by all. As an example, here is an extract of the text, where the ugly sisters are being horrible to Cinderella. It is performed in call-and-response in the same way as the Twelfth Night workshop, with everyone joining in the final line (in italics). Volunteer Cinderellas are invited to go the middle of the circle and are subjected to the following verbal barrage, which ends with everyone thumbing their noses at the stay-at-home Cinderella:

You can’t go ‘cos you can’t And, perhaps the favourite dance episode, where Cinderella, You can’t go, you got no now dressed in her magical clothes ball-gown meets Buttons, You can’t go cos you stay who says: here You are so not going Cinderella! Nyah nyah!! Love the dress! Love the shoes! Love the hair-do! Love the bag! I’d look good in that! Oi! You! Buttons! Zip it!!

JULY – DECEMBER 2006 • DbI Review •49 Khyran treads the Boards!

The Holocaust Memorial Event On a Sunday at the end of January, Lewisham holds its annual Holocaust Memorial Day at the Broadway Theatre, Catford. The theme for the January 2006 event was ‘reconciliation’ and Malvolio’s story from Twelfth Night was clearly a story of reconciliation triumphing over revenge, and so the group was invited to perform on stage as part of the memorial event. Khyran and the ‘Globe group’ went on stage and performed the five episodes of Malvolio’s story from Twelfth Night in front of audience of about 700 people. One of the things that make this so impressive is that the group performed the story without any members of staff onstage with them. One of Khyran’s peer group from school led one of the episodes, and I thought this was fairly impressive until one of the staff told me afterwards that three years ago the pupil had been non-speaking.

The BBC’s 60 Seconds of Shakespeare Over the last year, the BBC has been running a ‘60-second Shakespeare’ project, in which any school is invited to make a 60-second film of a Shakespeare story and send it to the BBC, who may then post it on their website. So, in February and March 2006, Khyran and the Watergate-Fairlawn schools group returned to Shakespeare’s Globe for more performances of Twelfth Night, as well as ‘The Tempest.’ A 60-second film was made of an extract of ‘Twelfth Night’ and sent to the BBC who duly posted it on their website, where it can be seen (www. bbc.co.uk/drama/shakespeare/60secondshakespeare) It remains the only entry by an inclusive groups of pupils (from a special school and a mainstream school). The photograph ‘Act IV’ shows a Twelfth Night workshop being filmed for the BBC website, and also recorded for American radio. The workshop was subsequently broadcast in the USA on coast-to-coast radio.

The Old Vic On a very hot day in July this year, Khyran and his group visited the Old Vic Theatre at Waterloo and were lucky enough to have a two hour workshop on the stage, led by an Old Vic practitioner. This workshop included working with masks, and various role play activities. Khyran discovered that the auditorium sloped gently downwards from the back stalls to the stage, and found it great fun to run backwards, towards the stage, while looking over his shoulder to keep to the aisle pathway. Some of us tried this and we can all testify that it is extremely difficult!

Epilogue The schools hope to return to the Globe Theatre later this year for another series of workshops. This time two plays will be performed in workshop, Shakespeare’s ‘The Taming Of The Shrew’ and John Fletcher’s ‘The Tamer Tamed’. We also hope to return to the Churchill Theatre for a series of workshops on ‘Mother Goose.’

Contact me directly at [email protected]

50 • DbI Review • JULY – DECEMBER 2006 Regional News

What’s on down under Australia

Australian Services: to Queensland where services has a committee of three A Status Report are almost non existent. As deafblind members, a parent another example, Sydney’s and three organisational While few would argue Forsight Foundation has for representatives, a New that Australia is a paradise many years offered high Zealand representative and for its citizens who are standard residential and a representative from the deafblind, a Google search vocational support to adults organisation acting as its provides plenty of evidence who are deafblind. Victoria’s secretariat. Its President is a that services are gradually Deafblind Association, with person with deafblindness. improving. For example, a its head office in Melbourne, It is the only organisation Mike Steer lengthy list of Australian was established in 1967. in Australia advocating for deafblindness agencies is reports It employs over 100 staff people with deafblindness provided for the reader at: and provides fully staffed and is a truly national http://www.deafblind.com/ accommodation in homes organisation. australia.html in the community, support Several of our States for people living in the provide excellent educational Reports, Conferences community, respite care, and support facilities for and Special Events day services, recreation, children with deafblindness. Currently the Prain Report support for community Of particular note in this (described in the January- clubs, computer training regard is Sydney’s Royal June issue of DbI Review), and establishment of related Institute for Deaf and Blind is at the time of writing, services in people’s own Children (RIDBC), which has sitting in Canberra with homes, music therapy, advice world wide recognition. It the Federal Government’s and information. Senses was established in 1860 and Disability and Carers’ Foundation in Perth has a was responsible for initiating Branch of the Department similar wide range of services one of the first international of Family and Community for people with deafblindness conferences on deafblindness Services (FACS). Delay by The Australian DeafBlind in the 1970’s. Information Government in acting Council (ADBC) was about its services can be upon its recommendations established in 1993 to found at: http://smiley.ridbc. is highly frustrating for represent and advocate for org.au/ members of the Australian people with deafblindness, Deaf Blind Council (ADBC). their parents and support The report, funded by the persons, their service Minister for FACS, not only providers and related covers the numbers of professionals. In 2004 it people with deafblindness was funded by the Federal nationally, but also examines Government to update the services available to the 1990 Ward Report on them. Its author makes a Deafblindness in Australia number of recommendations and review numbers for improvements in these of people in Australia Adult facilities and services, plus other proposals with deafblindness and programs across Australian relating to people with services available. This states and territories vary deafblindness. Report author report, mentioned in the quite significantly, with Meredith Prain, the project’s January-June issue of DbI Western Australia (where Steering Committee, its Review, known as the Prain Senses Foundation will be Reference Committee Report, is currently being responsible for the next DbI and ADBC’s Management considered by the Federal International Conference in Committee have worked Government. The ADBC has 2007) and Victoria having a hard on the project and a members from each state high level of service provision, great many other people and Territory in Australia and

JULY – DECEMBER 2006 • DbI Review •51 SubheadRegional hereNews

Australia have put much effort into contact the Conference voting for people who are assisting with it. ADBC now organisers, Senses blind or vision impaired at (continued) plans to take the issue of Foundation, before they the next Federal Election. the report’s lack of progress arrive in Western Australia. After the Inquiry into to a higher level and with the 2004 Federal Election, other people and bodies that PPert recommendations were made might assist it. Deafblindness Awareness to the Federal Government The Perth conference Week was held across that a trial of electronically will be, for many people Australia from 25th June assisted voting be undertaken with deafblindness, to 2nd July. Each state was at the 2007 Federal Election parents, supporting people, responsible for organising so people who are blind or professional staff and for related events. The Victorian vision impaired could cast anyone interested, perhaps Deafblind Association (based their vote independently the only opportunity they will in Melbourne) offered a two and in secret. Despite this ever have to attend a major week program including recommendation, the international conference sensory activities, afternoon Electoral and Referendum on deafblindness. The drinks for the Deafblind Amendment (Electoral last, and only other one Community, an art exhibition Integrity and Other Measures) in Australia, was held in and dinners for the public Bill 2005, currently before Sydney in the 1970’s.The including a lunch at its Federal Parliament, contains international conference is head office for people with no provision for a trial of the Deafblind International deafblindness and friends. electronic voting at the next 14th World Conference An education pack on Federal Election. and it is being held from Deafblindness was sent to all The ACT parliamentary 25th to 30th September schools in Victoria. elections (2001 and 2004) 2007. Registration for the demonstrated that electronic International Conference is at voting allowed people who Access to www.dbiconference2007.asn. are blind or vision impaired au The Conference language Independent Voting to vote in secret. However, will be English and Auslan Contrary to the all States and the Northern platform interpreters will be recommendation of a joint Territory continue to deny provided for all plenary and parliamentary committee, independent voting to key note addresses. Anyone the Federal Government has people who are blind, vision needing an interpreter should decided not to trial electronic impaired or Deafblind.

Cost of Hearing and Vision Loss to Australians

Listen Hear! Report’ from ‘Clear Insight: The in the last decades of life. Access Economics has Economic Impact and Cost By 2024, the number of identified that hearing loss of Vision Loss in Australia’ Australians with vision is costing Australia $11.75 from Access Economics impairment or blindness is billion a year, or 1.4% of found that vision impairment expected to increase to nearly GDP. One in six Australians is a huge and overlooked 800,000. Another study by is affected by hearing loss problem in Australia. Total Access Economics, ‘Centrally and that figure is projected real financial costs (direct Focussed: The Impact to rise to one in every four and indirect) of vision of Age-Related Macular Australians by 2050. Hearing impairment were $5.0 billion Degeneration’, reported that loss is also age-related, in 2004. Almost half a million AMD is the leading cause affecting three in every four people have impaired vision of blindness in Australia, people aged over 70 years. For and over 50,000 of these responsible for 48% of severe more information go to www. are blind. The prevalence vision loss. More information: vicdeaf.com.au and follow of vision loss trebles with cera.unimelb.edu.au/ the Listen Hear! link. each decade over the age of publications/reports/access/ 40, increasing dramatically access_amd.pdf.

52 • DbI Review • JULY – DECEMBER 2006 Regional News

years and the world : Where Norway have we been and where are we heading? It all culminated Knut with a gala dinner with Johansen lots of speeches covering records memories from more than fter 20 years as communication. the past 20 years. very special Norway’s first People with acquired I think it was important to anniversary! Aresidential services deafblindness and their stop for a while and reflect for adults with congenital families were invited to a upon the development deafblindness we found it guided tour on our premises, we have been through was time for celebrations. We various activities, good food during these years, with a divided the anniversary into and lectures about haptic tremendous effort put down three parts, allowing each signals and the use of guide from all involved. group to benefit the most dog. I am happy to say that it from the program. Finally our own staff turned out to be 3 successful People with congenital members, previous and days, and I want to express a deafblindness were invited present board members, heartly thank you to everyone to a music workshop and collegues and friends from who remembered us through various other activities around the Nordic countries their congratulations, e- and good food, while were invited to a historic mails, letters, presents their families and staff journey concerning how and otherwise, including a were invited to lectures communication has been congratulating letter from about musical aspects in considered throughout the the DbI.

amir Dhale has team. Zamir’s work will Zamir has been given the India been appointed to include interacting with a chance to develop his skills Zthe new post of host of stakeholders, namely as a ‘leader’ in the deafblind Advocacy Officer with Sense deafblind people, their sector. Zamir has been the International, India. He is family members, government “Braille Press Assistant” in the M.A.Rangoonwala Mini their first deafblind member officials, representatives of staff. Braille Press at the Helen of other development The key area of work for Keller Institute for the Deaf organisations, practitioners Zamir is to develop greater & Deafblind, Mumbai. One and general public. Zamir will awareness and recognition of Zamir’s more glamorous have a full time interpreter/ of rights of deafblind people assignments was as sign guide. language and mobility trainer and their family members Zamir was educated at to both Rani Mukherji and throughout India. He will be the Helen Keller Institute for Amitabh Bachchan for their responsible for developing, Deaf and Deafblind Children. successful roles in the movie implementing and Ms Beroz Vacha was “Black”. monitoring the lobbying and Headteacher when he joined advocacy plans of S I India the school and has been the Akhil S. Paul and he will be managing this one who gave the “education Director process. with the support for life”. She made sure Sense International (India) of the SI (I) Programmes that, in spite of all the odds, www.senseintindia.or

reat News for Bolivia the Ministry of Health and have been campaigning with Bolivia and well done the Bolivian Committee of colleagues and deafblind Gcampaigners! Disabled people as a UNIQUE people and families to secure Ximena Serpa wrote to disability! Patricia and this success! tell us that Deafblindness Sandra, who work for Sense has been recognised by International, Latin America,

JULY – DECEMBER 2006 • DbI Review •53 RegionalSubhead hereNews

Argentina First National Congress in Deafblindness and Multiple Needs “Communication, a iii. the relationship between support them and promote path to quality of life”. professionals and parents a more active role. and how they can achieve f) There are no models that General Pico, La Pampa, was the same goals. can be applied to persons the place where parents, iv. the interaction between or Institutions, but there professionals, government different institutions and are projects that can be a representative and the community. starting point for change, President of community met for this b) Communication is the being adopted as a principle Congress. It was organized the Congress: foundation of an educative of individualization or by Escuela de Ciegos y Dism Mgter. approach, related to quality contextualization – each Visuals n’2, Hilton/Perkins of life. It is also related to place taking into account Beatriz Zoppi Program, Councillors and an ecological paradigm of their own realities. the Mayor of the city and reports: inclusion. g) The transition to adult life was held in the Auditorium c) It is considered necessary must have solid statements of Faculty of Veterinarian to change attitudes, have that can help to guide the Science. It was considered of access to critical reflexions process for persons, for special interest to the national towards the psychological/ families and communities. authorities: the Education and medical paradigm that is h) We must have a Culture Ministry, and Director present in our model of commitment from the of Inclusive Education. It was Special Education. State, Institutions, NGO, a good opportunity to share d) It is vital and important that professionals, families, professional knowledge with each professional, family, persons with disabilities, to families. We had a successful institution, organization share knowledge and try time. shares with others the to increase the work with Here are the conclusions: knowledge about rights Institutions that work with a) Communication is essential and possibilities for a people with deafblindness to be considered at all levels deafblind person and with and multiple needs and and in all interactions for multiple needs. their own families. i. the development of each e) The families are essential i) We must influence the person with multiple needs, to the approach, together the authorities for legal giving a possibility for their with professionals. We recognition of deafblindness self-determination. must respect their way of as an unique disability. ii. his/her inclusion in the participation and try to community.

Canada CDBRA Elects A New President

t the recent Annual Wylie joined the National of whom is deafblind. She General Meeting Board in 2003 as the is currently finishing her Aof the Canadian representative of the British Bachelor of Arts in Applied Deafblind & Rubella Columbia Chapter. She Communication from Royal Association – National, Wylie served on a number of Roads University along Bystedt of Quesnel, British national committees, recently with being a very hard Stan Munroe Columbia was elected as completing two years as working business lady. As National President. Wylie Editor of the Intervention well as her work in the replaces Patrick Peterson as News magazine and two deafblind community, President. Patrick stepped years as the Vice President of Wylie is also active on a down from the National Special Projects. number of provincial and Board of Directors after 18 Wylie is the parent of two municipal business and social years of dedicated service. daughters, the younger development boards.

54 • DbI Review • JULY – DECEMBER 2006 Regional News

SOCIEVEN – Working on Behalf of Deafblind People Venezuela DbI’s newest corporate member has been spectacularly successful in raising the profile of deafblind people in Venezuela.

ordociegos (Deafblind) multiplying effect by training pronged strategy, seeking of Venezuela professionals. Maria Luz says sponsors for its activities and S(SOCIEVEN has worked that they are pushing for a financing for technical aids for 10 years, teaching and master’s degree programme such as hearing aids, special Maria Luz improving the quality of life in a local university. glasses and magnifying of around 100 deafblind Centres for “Integral glasses, organising Troconis people, and is now seeking Attention to the Deafblind” educational projects, and out many more people. have been set up by the recruiting volunteers and This is the aim of María Luz Education Ministry in all of “ambassadors” for the cause. Neri, director of the non- Venezuela’s 23 states, and These ambassadors are governmental organisation. deafblind adults have created public figures from the arts According to her estimates, a mutual help association or from show business, like there could be as many as which also seeks to promote Vanesa Peretti, one of the 4,000 dual sensory impaired their interests. The centres contestants for the 2005 Miss people in this South American and the association have Venezuela beauty pageant, country of 26.5 million. located some 400 people which is watched by millions The situation is similar or suffering varying degrees of of TV viewers every year. more accentuated in other dual sensory impairment. Peretti was the first deaf countries of Latin America, Some are deaf people who woman to take part in the according to reports by the have developed cataracts. pageant since it began over International Council for Others, in the Caribbean half a century ago. She drew Education of People with island of Margarita, involve a great deal of attention as Visual Impairment (ICEVI) cases of Usher Syndrome. she communicated with her and the Perkins School As dual sensory impairment companions, the jury and the for the Blind, based in the is not linked to poverty, Maria public in sign language. United States. Luz knows the people who “Vanesa has been a SOCIEVEN now are the least informed are the beautiful example of understands that just most vulnerable. reciprocal support for like it directly helps a few In Venezuela, SOCIEVEN SOCIEVEN”! dozen people, it can have a has adopted a multi-

Deafblindness is recognised as a specific disability Nepal in Nepal! Lone Poggioni his morning I got deafblindness is not a multi the government for the writes “ a wonderful mail handicapped disability Deafblind cause in Nepal. Tfrom the president but a specific handicap. The handicaps which are of National Federation of I have send him lots of now officially recognised in Disabled, Nepal (NFD-N) Mr. papers about deafblindness Nepal are: Birendra. It means that the and finally during the ● Physical handicaps Nepalese government has conference in Dhaka, where recognised deafblindness as a I asked him to take part ● Blind and low vision specific handicap. he really understood that ● Deaf and hard of hearing During my four visits deafblindness is a specific ● Deaf-blind to Nepal I have talked a handicap. ● Speech impaired lot with Birendra to help Now I think it will be easier ● Mental handicapped him understand that for us to get support from ● Multi handicapped ”

JULY – DECEMBER 2006 • DbI Review •55 CochlearSubhead hereImplant Users

Multi-handicapped children – Cochlear Implant Users and their Education

Ass. prof. Milon Potmesil, Department of Special Education, Faculty of Education, Palacky University, Olomouc, Czech Republic

Summary: in several specialized areas. children wishing to become The author is dealing with Because of that first case, involved in the programme. the problem of the quality those of us working in special It is also necessary to reflect of life concerning multi- education were stimulated on the fact that not all of handicapped children. He to consider the repercussions these children have a fully suggests some changes that of extending the group of functional or complete family may be enabled by the use children, to those that are to support them. and accessibility of cochlear very severely disabled. implantation. To express For such cases, the extent New Project life quality it is possible and methods of pedagogical Currently we are opening to consider financial costs work before and after a project whose aim is and also immaterial costs. the implantation should to research the numbers Both types of expenses are certainly be considered. We and types of disabilities in described here. The author is have in mind those children children who are brought up/ convinced that sign language whose disability makes taken care of in a non-family as a way of communication traditional education very environment.1 The project before the implantation is hard. In terms of quality is looking at children, up to a very important condition of life we believe that a 15 years old. In addition, we for developing the spoken cochlear implant can improve suppose that there may be language afterwards. opportunities to learn and a relatively large number of The author concludes by lead to a markedly higher older people with combined proposing a list of steps quality of life. We are sure handicaps and that some of needed to provide conditions that the post-implantation these people may benefit for further cochlear aim to build functional from cochlear implants as implantations for multi- speech, as the means of well. handicapped children. mutual communication, We use a model of an In the last couple of years, will not be applicable to individual’s quality of life as the numbers of people all of these children. It is the area defined by a triangle having a cochlear implant desirable to determine whose apexes are: and adopt different and have increased because ● the child more appropriate criteria of a new group - multi- ● the parents for choosing implantation handicapped users. The first ● quality of life of the society case of cochlear implantation applicants, and at the same time, to extend the admission in a multi-handicapped The child, in this context, child generated discussions guidelines for considering the

1 We have in mind children who were placed into various institutions by a court decision. We believe that there are a relatively large number of children placed in nursing homes, social welfare institutions, institutes for infants and in other similar institutions. One of the conditions, which are essential for the Health Insurance Companies when deciding on the implantation, is a complete and functioning family. Apparently, children without their own families, placed in various institutions are evidently disqualified. In our own experience we can state that these children have both the professional special pedagogical care and health care generally on a higher level than children do with a family. And this is also true for the accessibility and frequency of sessions.

56 • DbI Review • JULY – DECEMBER 2006 Cochlear Implant Users has a combined handicap Quality of life issues factor of school involvement and has special educational and economic cannot serve as criteria for needs that are extremely challenges measuring success the most hard to meet. In most cases complex group of multi- the child does not learn in While assessing life quality disabled children. What is traditional ways due to their one cannot disregard the apparent is that the benefit multiple problems and as a economic point of view. If of having a cochlear implant result had become labelled as we are to talk about the improves the life quality resistant to education or even quality of life, we should for a deafblind child. This is upbringing.2 include both children with indisputable. Furthermore, if We consider it very various types of handicaps as the criteria were adjusted to important that the list of well as children who suffer take account of their different conditions that qualify for from a long-term disease requirements then access an assessment for “quality of and those with poor health. would be fairer. life” includes all conditions, Only when the whole group ranging from those of a is characterised in this broad wider ecological character to way we can assess the life Firstly, the quality of life is quality of individual case “ those with a lower incidence. not limited either socially or Nowadays, one of many studies. Clearly, decision important parameters for making is difficult when by state of health, secondly, describing quality of life is resources are limited and school attendance and its how we make judgements the basic prerequisite is to accessibility. In the Czech related to different children Republic school attendance is is very tough indeed. How approach life quality as a trend, based on a legal requirement do we value a child receiving which states that “Everyone a hearing aid against a child not as a state.” has the right to be admitted for an emergency educated.” Citizens have the cause by a traumatic event? Health care economics are right to get free education Both demand resources from involved in considering the in primary and secondary the public purse and both costs and outputs of various schools; and according to an children have needs that are alternatives. A comparison individual’s abilities can also real to them. with the principles of move into higher education. If we are to consider the microeconomic theories are However, there is a very group of multi-handicapped used (O´Neill) and present different interpretation of children we must admit three types of economic this law for “really severely that the benefit of having evaluation/measurement of handicapped children”. a cochlear implant will health care effectiveness.3 For this group there are a hardly be comparable to the The first type deals with number of barriers that are expected benefits for children direct costs. These are the put in the way of children with a single handicap - a costs that are derived from all with complex needs ever hearing handicap, generally steps/items connected with joining the school system. In deafness. the surgery. In the case of fact these children can have This means that the cochlear implant, these costs school attendance postponed expected speech quality include all examinations, or are even exempted factor and the factor the special-pedagogy pre- altogether of successful spoken operation examination, communication or the the implantation and the

2 Not all of the terms used previously have vanished without a trace in history. Some doctors still have not completely abandoned their out-of-date positions in the relationship to children with multiple handicaps. Thus, nowadays we can still meet expressions like “asylum child”,” much too expensive examination”,” zero future”,” bed-ridden patients”,” bed-warmers” and the like. 3 the economic view of health cares must have priority. Only then comes the special-pedagogy view – after the surgery. However, it is one of the criteria for including the applicants in the list because of its potential, availability, intensity and expected results.

JULY – DECEMBER 2006 • DbI Review •57 Cochlear Implant Users

following after care including similar result in the case discussions across the rehabilitation. However, in of children with combined branches of study, sharing different countries the direct handicaps. There is, though, experience. costs do not consist of the one basic prerequisite It is not only economic same items so it is hard to common to both the groups costs that we should compare accurately with – the prompt special/ consider. It is essential other counties pedagogy care, even during to consider those types The second type describes the pre-operation stage. of “costs” that are not the indirect costs. These economic, but personal. costs include items that are Sign Language We know by intuition that not directly related to the The important role of sign these are hugely challenging. implantation and special language has fortunately But, we also know they are care. They are related to been recognised in the wider expected by parents and 5 external factors like the costs world. Let us hope that soon children. The child with the of parental absence from all the specialists involved implant can “feel different” work, travel costs, costs in cochlear implantation in and not feel they belong in connected with the purchase the Czech Republic decide to the deaf community or “the of special aids – toys, with follow the direction and pace hearing” Being comfortable the re-organisation of the of psycho-linguistic progress in society is vitally important. acoustic character of the and knowledge. Let us hope Parents are always worried flat, etc. However high, the so on behalf of children being about the decision they indirect costs influence the implanted, whose mental are making partly because parent’s decision-making development should include cochlear implants are a processes. In the case of the development of language relatively new technology children without their own and thus the development of and are based on less families the costs must be communicative behaviour. experience in comparison to covered by an institution, Furthermore, the fact the traditional approaches. generally a state institution, that students of special Parents and educators of that is responsible for the pedagogy are able to multi-disabled children have child’s care. explain basic mental and an even greater decision to The last group of costs is language development take, but often the decision 4 “immaterial” costs. They phenomena as soon as they is made for them as surgery arise on the part of the finish the second semester may be contraindicated. implant receiver. They relate of their studies may serve to hurt and pain and can be as guarantee that we will Work from Hanover reduced with professional not have to spend time and In the next part of the text support. energy to dissuade people we would like to try to from their out-of-date views. reflect on some experience Early is better? This progress will enable us and opinions published by The German author Schulze- to use methodology of work Bertram, Lenarz and Lesinski Gatterman reports the with children with combined in 1997, from the Cochlear success of early cochlear handicaps. We would like Implantation Centre lead by implantation and we would to stress here the need for Wilhelm Hirt in Hanover. like to speculate about a professional discussions, The authors specify the

4 The word “deposits” may illustrate the situation in a clearer way 5 It is important to stress here that in the proposed cases we also deal with children who do not have their own families. Apart from the term “a parent”, we automatically think about “a substitute” person. The more the institutional care and other types of non-family advance, the more often we must notice these children and consider the starting conditions of these implant applicants without a regular family 6 1. Somatic disorders: endocrinological, heart, motor, sight, neurological, nephritic 2. CNS disorders: sensory-motor integrity disorders, psycho-motor retardation, cortex deafness 3. Mental retardation: serious behaviour disorders, developmental retardation 4. Syndromes connected with a serious hearing disorder: Schwarz – Bartter, Undine, Landau – Kleffner, Peutz – Jeghers, Pendred, Jervell – Lange, Waardenburg, Schwachmann, CHARGE, Usher, Alport.

58 • DbI Review • JULY – DECEMBER 2006 Cochlear Implant Users group of children with combined hearing and vision To support further progress multiple handicaps that loss that has such an impact we regard the following they believe are suitable to on their ability to learn that demands as necessary: benefit from implantation it does not allow them to ● to propose a life quality and those who would not. successfully pass at primary definition that respects In their paper, four groups school. We have in mind the people with severe with combined handicaps6 children whose life quality combined handicaps are perceived by the authors may be increased by means ● to characterise the target as appropriate applicants. On of special pedagogy methods group in the most detailed the other hand, the authors and techniques that may way possible, on the basis introduce a list of handicaps enable them to decide on the of nation-wide research that may contra-indicated issues of their own lives, or not only within families but for cochlear implantation at least enable them to take also in various institutions because of their complex part in the decision-making providing care 7 disabilities. The German process. ● to construct a authors based their work If we want to try to find questionnaire for clients on data obtained from 570 a basis for determining life with the aim to find out implanted children. 110 quality we must choose the what they regard as a good are children with combined technique of comparison that life quality and well being handicaps. We do not have does not discriminate against ● to construct questionnaires the courage to say that the children with disabilities. It and find out the current German colleagues made a is important to adopt the views on life quality in the mistake, however, we have following statement as a respective interest groups been trying to find ways basic principle: “firstly, the (parents, educators/social to make cochlear implants quality of life is not limited workers, teachers, medical more accessible to those either socially or by state of staff, health insurance children who may be omitted health, secondly, the basic companies). from consideration because prerequisite is to approach of the above mentioned life quality as a trend, not contraindications. We have in as a state.”8 mind children whose severe

Bibliography

O´Neill,C.: Economic evalution in health care. Proceedings of a Conference on Health Technology Assessment, Queen Medical Centre, Nottingham, UK, 2001

Schulze-Gattermann, H. et al.: Cost – benefit analysis of pediatric cochlear implantation – the experience of the Medical University of Hanover. Proceedings of a Conference on Health Technology Assessment, Queen Medical Centre, Nottingham, UK, 2001

Bertram, B; Lenarz, Th; Lesinski, A; Cochlear Implant For Multi-handicapped Children – Pedagogic Demands and Expectations. Cochlear Implant Centrum Wilhem Hirte Hanover, 1997

7 We choose e.g. autism, serious behaviour disorders, auto-aggressive behaviour, hyperactivity, distorted social environment, serious intellectual disorder, transfer or central hearing insufficiency, sensory-motor insufficiency, limited or non-existent learning ability, states of spasms or attacks, malign diseases with a short or unfavourable prognosis 8 An illustration of a common life quality may be the following situation: the child is able to decide whether he or she wants to go to the swimming pool with the school-mates and later decide that he or she does not want to go into to water.

JULY – DECEMBER 2006 • DbI Review •59 OpeningSubhead doorshere

Opening doors to “Person Centred” communication

Seija Troyano and Tiina Latva-Aijo-Kortelainen write about a new professional qualification and role – the sign language instructor!

Seija writes: Seija Troyano After more than ten years with a cochlear implant I have seen my need for interpreters change quite a lot. I use spoken Finnish language and thanks to CI can normally copy independently with my daily communication situations. I also profit by induction. But when I get into the situations where there are many people around me all speaking and chatting at the same, it is certainly the place of have booked an instructor C(igarette) M(iddle)… interpreter! for my hobbies, such like The more we use it, the Normally, my requirements photography in the forests, more surprised we are are less demanding and swimming, taking part in how much information it is then I am happy to have a a marathon and when I go possible to receive during the modern alternative to it. In shopping. It has opened new meetings. The Instructor sits Finland we have now sign doors for me and …freedom! behind me as my seat is the language instructors! Their In Town Council meetings last one in the row near to strength is versatility. After I get valuable information the back wall. So there she is 3 years of studying they from the instructor. She acts and she lets me know when can communicate in sign as intermediary in giving me the Chairman of the cabinet language when needed and rapid information about how slips out for a cigarette in the they have large knowledge people vote. I can not see middle of the meeting with about the needs of deaf and the “yes” or ”no” that are a member of his party!! Or deafblind people. Their job is electrically thrown back on when other changes happen. not to interpret but they can the wall of the room where After three years of repeat to you what someone the meetings are being held. study these sign language says if you miss it. However we have developed instructors are very rich They are just ideal for the very effective way of our skilled alternatives for person like me! own using simple letters deafblind people who do not I have booked them and symbols. When there need an interpreter but still for weekend trips and is “block” of same letters need support. meetings to the places that we use English alternatives are unfamiliar for me. I happily and fluentlyJ - B(oss)

60 • DbI Review • JULY – DECEMBER 2006 Opening doors

Seija Troyano’s Tiina Latva-Aijo- instructor, Tiina, writes: Kortelainen I am a Sign Language Instructor-student from Finland and my name is Tiina Latva-Äijö-Kortelainen. I was interested in this occupation for its various possibilities. Sign Language Instructors work in different communities using sign language in many different ways with a range of different people from young children to the elderly. We support deafblind people interested in. We were taking our first steps to by learning the principals of discussing how you can develop and try this method communication, guiding and get information if you have somewhere. We are both changing conditions. In my serious limitations of seeing really exited about this all course I study issues related and you see a narrow field. and we also wanted to to deaf-blindness for which Seija communicates with share this with you. We I receive credits towards my speech, so she doesn’t want were wondering if this kind qualification. to use sign language and sign of method have been used This is my final and third language based methods to before? So please, don’t year of study. I will start my get information. We started hesitate to contact us if you new occupation next May to think how I can pass on are interested in keeping in 2007. Before that I have to to Seija all the important touch or can help in any way. work on with my Final Project. messages, that I see and hear, for example at the City Tiina Latva-Äijö-Kortelainen About my Project Council, where she works. Vaahteratie 24 B 5 I am also working at the We are developing a 70420 KUOPIO Kuopio City Interpreter method that is based on FINLAND Centre as an instructor and letters and simple drawings. [email protected] a guide. This is how I ended We used English words Seija Troyano up working with Seija. because they are familiar to seija.troyano@ We met for the first time both of us. So I write or draw dnainternet.net at the Varkaus Marathon. on her back at the same time And as you can imagine she concentrates at her work. Please contact Tiina or Seija we had a good time to talk My Final Project has just for further information of the about everything we were started, so we’ve just been course being undertaken. A new organisation Alfred Josep Pevcin, group of individuals and the association already President, introduces the who are connected by co-operates with various common interests. They are organisations in Slovenia Deafblind Association of deafblind persons and legal and would like to have Slovenia “DLAN” representatives, others that more contact with other The Deafblind Association support the Association countries and International of Slovenia “DLAN” is a in its aims in respect of associations. voluntary, non-profit making, deafblind people. DLAN has [email protected] non-political, independent a President who is deafblind

JULY – DECEMBER 2006 • DbI Review •61 DbI members – Have your say!

this consultation, be sure to fill in DbI Strategic Review the online questionnaire. If you have some specific points you want Have your say in planning for future developments! to make, then you can contact any member of the Strategy Review hat is DbI’s future? You The Strategy Review Group Group. They are: will have the opportunity was set up by Council and Wto contribute your ideas ManCom and asked to consider Tony Best UK – in the next few weeks. the organization’s future. It has [email protected] All members now have the already met to identify the main Akhil Paul – opportunity to complete an on-line issues over the future. We are now [email protected] questionnaire, which is available consulting members about their Sergei Sorokin – on the DbI website. Selected views. The Review Group will meet [email protected] members, particularly those in January to discuss the ideas for actively involved as network chairs, the questionnaires and interviews Maria laynes Valdivia – will be contacted personally over and put these into a strategic plan. [email protected] the next few weeks by members The final plan will be considered Isabel Amaral – of the Strategy Review Group. by DbI Council and announced at [email protected] They will talk with them about the the DbI International Conference in impact DbI should try to achieve in Australia 2007. Tony Best the next few years. If you want to be involved with Chair, DbI Strategy Review Group

In nominating your network or Nominations Committee small corporate your organisation Who will be on the DbI Council in 2007? It’s up to you. must have paid the DbI membership fee. The representative from your ou may be aware that the to continue and if that is the case small corporate or network must current Council members, then please tell us. The current be able to attend Council meetings Yincluding the President President and Vice Presidents and be willing to contribute. and Vice Presidents, have the need to know if you wish them to It’s important that we hear from opportunity to stand for re- continue beyond 2007. However you. The nominations committee election in 2007. Small corporate you can also choose to put forward are likely to be faced with difficult associations and networks together new candidates. decisions about who to recommend can make up to 20 of a total of 35 In nominating individuals for the to take up the limited number of seats on the Council. Currently there officer roles for Council you should places. Your view counts and the are 44 small corporate associations make sure the person you are nominations committee wish to and 15 networks so there are more nominating agrees and is willing to be guided by the thoughts of the associations than there are available stand. The person nominated must wider membership. places on Council. be able to attend DbI meetings and You can make your nomination The Nominations committee are have the capacity to contribute to by contacting the Chair of the looking for a balanced Council the Council. Nominations Committee, Gill that reflects as many geographical The individual or the person’s Morbey. You will then be e –mailed areas as possible. We also wish as corporate body must be a paid a nomination form for you to many interests of deafblindness as up member of DbI. We know this complete. The first step is just to possible to be represented so we has caused some concern but the contact Gill at the address below. will be taking account of areas of Council have taken the view that Please make your nomination by interest including siblings, acquired the membership fee is relatively 30th January 2007 at latest. deafblind, congenital deafblind, low. Further if the fee is too much Gill Morbey development, service based, it is likely that attendance at [email protected] employment etc. meetings would also be difficult The President and Vice Presidents and contributing to meetings is an Nominations Committee are also standing for re-election. essential part of being a Council Knut Johansen You may want the current officers member. Bushan Punani Mike Collins

62 • DbI Review • JULY – DECEMBER 2006 Masters Programme

University of Groningen, the Netherlands Masters Programme, Educational Sciences Section MSc Communication and Congenital Deafblindness

Description of the programme: ● a project, that is a research or clinical-based The Master of Science programme – thesis (45 EC’s). Communication and Congenital Deafblindness ● a reflective essay linking project work to – is a unique programme which provides students overall theories and models (5 EC’s). with the opportunity to acquire theoretical and methodological skills enabling them to analyse Structure of the programme communication in complex situations. The programme is a year in duration. In The methods used will enable them to apply September, in order to prepare the first this knowledge in the context of research and module, students will study advanced intervention. This course aims to provide deafblind literature at home. persons and hearing sighted persons with In October, students spend 4 weeks at the tools that help them in their mutual efforts to University of Groningen, attending lectures, understand each other. and preparing the topic of the thesis. This innovative European Master’s programme In November, students return home to start is based on and inspired by the work of the DbI their project. This will be related to practice 1 ECN. with congenital deafblind people through either direct work or video-recordings. During Contents the implementation of their project, students We will explore the possibilities of a dialogical will keep contact with their supervisor. approach to communicative development In May, students write the reflective essay. including: All work has to be finished by 31st August Dialogicity of mind: intersubjectivity-subjectivity; Conversational practice: tactile approach; For more about admission Communicative intentionality; Joint attention; requirements, fees and facilities Spontaneous gestures: meaning potential; DbI European Communication Network Spontaneous utterances: meaning potential; Curriculum coordinator: Dr. Marleen Janssen Referential gestures: mimetic, iconic and pointing; Narrative frames; Negotiation of Address: shared meaning. International Master of Science in Education The students will learn how to apply this Section: Communication and Congenital Deaf conceptual framework in the context of blindness assessment, intervention and research. Grote Rozenstraat 38 9712 TJ Groningen, The Netherlands Structure of the Curriculum Tel: +31 50 363 6575 Fax: +31 50 363 6564 The total programme is 1680 hours of study e-mail: [email protected] (60 European Credits) Groningen University website: This is made up of: www.rug.nl/corporate ● specialised theoretical themes, including the study of literature (10 EC)

1 The Deafblind International European Communication Network started in 1988. This working group gathers knowledge about communication and congenital deaf blindness, combining recent research with examples of practical knowledge from the field. This has resulted in the production of video’s, seminars and papers, which continuously provide state-of-the-art reports. Five different countries are represented in the working group. The members are: Marlene Daelman, K.M.P.I. Spermalie, Brugge, Belgium; Flemming Ask Larsen, NUD; Marleen Janssen, University of Groningen, The Netherlands; Anne Nafstad, Skådalen Resource Centre, Oslo, Norway; Inger Rødbroe, Resource Center on Congenital Deafblindness, Aalborg, Denmark; Jacques Souriau, CRESAM, Poitiers, France; Ton Visser, Viataal, Center for Expertise, Sint-Michielsgestel, The Netherlands.

JULY – DECEMBER 2006 • DbI Review •63 BookSubhead review here

Experiences from People with Deafblindness Booklets published by the Information Center for Acquired Deafblindness By Ilene D. Miner, Services to Deaf and Deafblind People, USA

he booklets on Usher Syndrome, for families work, I have often spoken of Deafblindness of and friends of people with the well-known phenomenon Tthe Nordic Project, Usher syndrome, and also for of the ‘elephant in the living published by the Information every professional involved room’: a family member Center for Acquired with people with Usher. with Usher which is never Deafblindness, taken all discussed. together present a picture This kind of For professionals, reading of the lives of 20 deafblind “ these booklets is a humbling people in Norway, Sweden, longitudinal study experience for it shows Iceland, and Denmark. The us clearly the perceptions members of the study were has never been of those we serve. These interviewed yearly for five completed before booklets highlight some years, not only giving a of the issues that we have snapshot of their lives, but and contributes been missing and our own a longitudinal look at lives attitudes that cause difficulty and changes over time. This enormously to our for our clients. We are kind of longitudinal study has reminded again that the never been completed before understanding of most important person and and contributes enormously mentor for a person with to our understanding of the the lives, feelings, Usher is others with Usher. lives, feelings, opinions, and We service providers are NOT perceptions of people with opinions, and the most important people in Usher Syndrome. perceptions of the lives of deafblind people. What is extraordinary is For me, as a provider from that the patterns, problems, people with Usher the US, reading about the observations, needs, lives of people with Usher in and conclusions that are Syndrome the Nordic countries leaves identified are drawn from ” me intensely envious; the the signs, words, and Although some people with baseline of services, i.e. lives of people with Usher Usher often know others with the availability of contact themselves, not from what Usher, it is not common for persons, and interpreters, professionals think that people to reveal themselves although not perfect, means people with Usher need. to others with the depth that that deafblind people can The informants are they do here. Informants said lead and control their lives. articulate and willing to share that they wanted to know Some of what is a daily their lives. The interviewers about the lives of others and struggle in the US, securing are clearly highly skilled and these booklets provide that services of a contact person able to make the interviewers opportunity. and/or interpreter in many comfortable enough to share Many friends and families cities, states, and towns, is this material and their lives. never share feelings on the less of an issue in these four These booklets are level presented in these Nordic countries. important for people with booklets. In my professional Throughout the booklets,

64 • DbI Review • JULY – DECEMBER 2006 applicable beauty and information importance and research of this is discussed series. and connected The to issues for lives of people with people with Usher. This Usher are provides context and a each complicated and framework for understanding unique. There are of the comments of informants course commonalities with in their own life cycle. themselves, not from others who have acquired There is important professionals or even from progressive disability, such information in each booklet family around the person as the need to re-grieve that can inform the work with Usher. These are the real and reintegrate losses of every professional in the experiences and feelings of and changes over time, to fi eld. Each booklet ends with people with Usher Syndrome, develop a new integrated a Summary section and a living their lives quite fully. and cohesive sense of self, section called Worth Thinking The arrangement of the impact on life’s meaning About wherein there are interviews by topic at yearly and relationships, there are conclusions and trends and intervals without including few other situations in which of course questions about retrospective changes in communication and therefore the implications of what has the one year period in some one’s lifeline can be lost. been found. way loses the benefi t of The Project is to be interviewing longitudinally. commended for this In Summary Knowing how informants extraordinary undertaking. I These booklets make an coped with a setback or only wish the project could important contribution handled a diffi cult experience have taken place in the US as to the fi eld of acquired they faced during the well! deafblindness and Usher previous year would have Syndrome. There is so much provided information to The booklets can be information about the real others facing that situation. downloaded as pdf or lives of people and their The recurrent themes of Word fi les from the struggles and joys that is communication, interaction, Information Center for impossible for the average life and work, the struggle Acquired Deafblindness’ person to know about. We to fi nd meaning in a new website at www.dbcent. all benefi t from reading these and different life are woven dk. From the front page, booklets. throughout. We all benefi t choose the English version, Additionally for readers and grow from reading about then choose “Publications” to remember is that Life with Usher from the and fi nally choose “Printed this information comes viewpoint of the person with material”. from people with Usher Usher. This is the heart of the

JULY – DECEMBER 2006 • DbI Review •65 Secretariat News

Secretariat News may be interested in joining DbI as a corporate member, please pass on their details to the Secretariat now! DbI Management Committee and DbI would like to express its Council meetings were held on 16 appreciation for the continued support and 18 July 2006 coinciding with the of the large and small corporate 12th ICEVI World Conference at Kuala members. We strongly encourage DbI is a vital network for Lumpur, Malaysia. If you want more individuals to join DbI in order to all involved in the field of details on these meetings contact the deafblindness. In order to contribute to and widen our global Secretariat at secretariat@deafblind best serve our members, community in the field of deafblindness. international.org. The next ManCom it is crucial that we raise If you have any queries regarding the meeting was held on 17 and 18 sufficient funds through status of your membership, please do November in Boston. fees to finance our basic not hesitate to contact the Secretariat activities. With this in Since the last issue Emanuela at secretariat@deafblind mind, there is a Corporate Brahamsha has taken over the role a international.org as well as an Individual DbI Secretary. She can be contacted membership form for you on Emanuela.Brahamsha@sense to fill in. Please encourage international.org.uk DbI Website as many people as possible The DbI website is available with to join. DbI World Conference updated information. Please visit the Non-Voting Members website and share your feedback with consist of individuals, The 14th DbI World Conference will us. national networks be held from 25-30 September 2007 We welcome new submissions to the and non-subscribing at Burswood Resort in Perth, Western website. If you would like to contribute Corporates. Non-voting Australia. It is being organised by members can contribute or advertise an event or recent success, Senses Foundation. The Scientific to the decision making please send details to Eileen Boothroyd, Committee held a planning meeting in process of DbI through DbI Information Officer, at Eileen. July 2006 in Malaysia. either a corporate member [email protected]. Exciting international and national or an international network. Non-voting speakers will form part of the The DbI Secretariat members will receive Conference Programme based around a copy of DbI Review the Conference theme, “Breaking The DbI Secretariat is always aiming and other relevant DbI the Isolation - Forming Worldwide to improve the service that we offer. information. Connections”. We look forward to your suggestions, Non-voting membership The Call for Papers has been advice and support for providing a costs €30 a year or a extended and now closes on 31 timely and effective service. discounted €100 for four January 2007. We hope that you received your copy years. For more information please visit of the previous issue of DbI Review Voting Members are http://www.deafblindinternational. (issue 37). If you have not received your the representatives of org/standard/conferences.html copy, please contact the Secretariat. corporate members or contact Conference Planning We are also keen to update the who have paid their Committee at conference@senses. information we have about you and subscription fees, and the representatives of asn.au your organisation, so kindly make sure recognised DbI networks. you send your membership renewal forms with your latest contact details to There are now two tiers of Membership Update Corporate Membership: the Secretariat. All DbI members are encouraged to If you have any queries regarding Large Corporates: renew your membership, if you have your current membership or would like Annual Fees between not done so already. Please quote €3,000 and €5,000 to complete the membership form via your specially assigned membership email, please contact Parag Namdeo at: Small Corporates: number in all communications. secretariat@deafblind Annual Fees between There are currently more than 650 €300 and €1,500 international.org or post your query individual members and 56 corporate at: DbI Secretariat, Post Box No: 9601, Corporate Members can members, from more than 80 Janakpuri, New Delhi – 110058, India. be nominated to sit on the different countries. Council. If you know of any organisation that

66 • DbI Review • JULY – DECEMBER 2006 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 two tiers of Corporate Membership: Town/City State/County Large corporates Zip/Post Code Country Annual fees between €3,000 and €5,000 Telephone no. Fax no. Small corporates (Please include country and area codes) Annual fees between €300 and €1,500 E-mail address: We would like to join DbI as a Large/Small Are you: Corporate Member (please delete as appropriate) a deafblind person a family member a professional Does your organisation work primarily for/with: We submit an annual fee of € blind people deaf people deafblind people Corporate members are entitled to receive disabled people other (please specify) up to 25 copies of DbI Review. We would like-______copies in English Your contact details will be made available to DbI members (delete as appropriate) for DbI purposes but will not be made available for Member Details: commercial purposes. Organisation DbI Review (please check one box in each category) Representative A. I would prefer to receive DbI Review in: Address (Line 1) English Address (Line 2) B. I would prefer to receive DbI Review on: paper disk* (The disk version of DbI Review is supplied in text only format, on floppy disk) Town/City State/County Membership Fee please tick where appropriate Zip/Post Code Country I wish to pay an annual membership fee of €30 Tel: I wish to pay for 4 years’ membership at the discounted (please include country & area codes) rate of €100 Fax: Please waive my membership fee as I am unable to pay it (please include country & area codes) at present 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 much 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.

JULY – DECEMBER 2006 • DbI Review •67 Honorary Officers

President Graciela Ferioli Treasurer William Green Hilton Perkins Ton Visser Lega del Filo D’Oro Independencia 376 Viataal Via Montecerno 1 Planta Baja Apto. ‘D’ Theerestraat 42 60027 Osimo (AN) 5000 Cordoba 5271 GD Sint-Michielsgestel ITALY ARGENTINA The Netherlands The World Association Promoting Services for Deafblind People Tel: +39 -071 – 72451 Tel: +54 – 351 – 423 4741 Tel: +31 - 73 - 55 88 111 Fax: +39 – 071 – 717102 Fax: +54 – 351 – 423 4741 Fax: +31 - 73 - 55 88 994 Email: [email protected] [email protected] Email: [email protected] Vice-Presidents Secretary Finance Office: Small Corporate Members Bernadette Kappen Emanuela Brahamsha Viataal Overbrook School for the Blind Sense International Information Officer: AUSTRALIA fi Email: kohpohkwang@ssvh. 6333 Malvern Avenue 11 – 13 Clifton Terrace Celestine Hare edu.sg Eileen Boothroyd, Sense GREECE Philadelphia Finsbury Park The Deafblind Association Email: Taula Masta SLOVENIA PA 19151 London N4 3SR, UK Tel: +61 - 3 - 9882 7055 [email protected] Hellenic Association of Deafblind Franc Planinc USA Tel: +44 – 20 – 7272 2881 Fax: +61 - 3 - 9882 9210 Ragavi 27- Gyzi, Athinas 17 Deaf and Hard of Hearing Clubs Tel: +1 – 215 – 877 0313 Fax: +44 – 20 – 7272 6012 Email: [email protected] Kallithea 17573, Athens Association of Slovenia Fax: +1 – 215 – 877 2466 Email: emanuela.brahamsha@ [email protected] Telefax: 30-210-6440689 Tel: +386 1500 1500 Email: [email protected] senseinternational.org.uk Alan Baynham Fax: +386 1500 1522 IRELAND Royal Institute for Deaf and Email:[email protected] Blind Children Finola Loughney Tel: +61 - 2 - 9871 1233 The Anne Sullivan Centre SPAIN Fax: +61 - 2 - 9871 12196 Tel: +353-1-289 8339 Dolores Romero Chacon Large Corporate Members Email: [email protected] Fax: +353-1-289 8408 APASCIDE Email: annesullivancentre@ Tel +34 - 91 - 733 52 08 FRANCE NETHERLANDS SWEDEN John Finch Jean-Marc Cluet Ton Visser Sergei Sorokin Australian DeafBlind Council eircom.net Tel/fax +34 - 91 - 733 40 17 Email: [email protected] French Deafblind Consortium Viataal Resurscenter Mo Gard (ADBC) INDIA Tel: +33 - 1 - 4627 4810 Tel: +31 - 73 - 55 88 111 Tel: +46 - 122 - 23600 Tel: +61 -04 - 2743 5243 Bhushan Punani SWEDEN Fax: +33 - 1 - 4627 5931 Fax: +31 - 73 - 55 88 994 Fax: +46 - 122 - 23690 Fax: +61 - 3 - 9882 9210 Blind People Association Sven Sjoberg Email: [email protected] Email: [email protected] Email: [email protected] Email: [email protected] Tel: +91 - 79 - 630 3346 Association of the Swedish jfi[email protected] Fax: +91 - 79 - 630 0106 Deafblind (FSDB) GERMANY PORTUGAL UK Debbie Karasinski Email: [email protected] Tel: +46 - 8 - 399000 Wolfgang Angermann Antonio Rebelo Tony Best Senses Foundation Inc Gopal Krishna Agrawal Fax: +46 - 8 - 6595042 German Deafblind Consortium Casa Pia de Lisboa Sense Tel: +61 - 8 - 9473 5400 Shikshit Yuva Sewa Samiti Email: [email protected] Tel: +49 - 511 - 510080 Tel: +351 - 1 - 361 6650 Tel: +44 - 20 - 7272 7774 Fax: +61 - 8 - 9473 5499 Tel:+91-05542-242280 [email protected] Fax: +49 - 511 - 5100857 Fax: +351 - 1 - 363 34 48 Fax: +44 - 20 - 7272 6012 Email: w.angermann@ Email: [email protected] Email: [email protected] Email: [email protected] Email: [email protected] Lena Hammarstedt taubblindenwerk.de [email protected] Nationellt Kunskapscenter for SCOTLAND USA ICELAND Monika Brenes AUSTRIA Thorey Olafsdottir dovblindfragor Gillian Morbey Barbara Mason Tel: +46 87535940, Christoffel-Blindenmission Sense Scotland Perkins School for the Blind Christa Heinemann Deafblind Association of Iceland Tel: +49 - 6251 - 131 251 Osterr. Hilfswerk fur Taubblinde Tel: 354-5536611, 354-6981098 +46738030808 Tel: +0141-564-2444 Tel: +1 - 617 - 972 7502 Email: Fax: +49 - 6251 - 131 165 Fax: +0141-564-2443 Fax: +1 - 617 - 972 7354 Tel: +43 - 1 - 602 0812 0 Fax: 354-525-0001 Email: [email protected] Fax: +43 - 1 - 602 0812 17 [email protected] [email protected] Email: Email: Email: c.heinemann@zentrale. Ms Anna Lena Steenson ITALY [email protected] [email protected] KENYA oehtb.at Specialpedagogiska institutet Rossano Bartoli SPAIN Bernadette Kappen Geoffrey Atieli Tel: +46-15852300 Lega del Filo d’Oro Overbrook School for the Blind BELGIUM Sense International Pilar Gomez Fax: +46-15852317 Tel: +39 - 071 - 72451 ONCE Tel: +1 - 215 - 877 0313 Marlene Daelman Tel: 254 - 722 - 245861 Email: [email protected] Fax: +39 - 071 – 717102 Fax: +1 - 215 - 877 2466 MPI Spermalie Fax: (00254)- 20 - 782597 Tel: +34 - 91-353 5637 Egle Ohman Email: info@legadelfilodoro.it Email: [email protected] Tel: +32 - 50 - 340 341 Email: [email protected] Fax: +34 - 91-350 7972 A Regional Team for Fax: +32 - 50 - 337 306 Email: [email protected] NETHERLANDS rehabilitation for people with Email: Marlene.daelman@mpi- Bernard de Vries Deafblindness spermalie.be Visio, LSSB Tel: +4631999970 CANADA Tel: +31 – 55 – 5800695 Fax: +4631999974 Networks Roxana Spruyt-Rocks Fax: +31 – 55 – 5800890 Emails: Independent Living Residences Email: [email protected] [email protected]; Acquired Deafblindness Employment Network Staff Development for the Deafblind in Ontario [email protected] [email protected] Network Seija Troyano Network Tel: +1 - 905 - 770 4948 Netherlands Knowledge Centre SWITZERLAND Ges Roulstone Nakskovinkatu 8 as 9 Pilar Gomez Fax: +1 - 905 - 770 0598 for the Deafblind Barbara Bettenman 72, Church Street, 78200 Varkaus ONCE Email: [email protected] Tel: +31-343-442744 Schweizerische Stiftung für Market Deeping, Peterborough, FInland Calle Prado 24 Stan Munroe Fax: +31-343-443232 Taubblinde, Heim Tanne Lincolnshire PE68AL Email: seija.troyano@ Madrid 28014 Canadian Deafblind and Rubella Email: [email protected] Tel: +41 - 1 - 714 71 00 Tel: +01778-344-921 dnainternet.net Spain Fax: +01778-380-078 Email: [email protected] Association Marlies Raemaekers Fax: +41 - 1 - 714 71 10 Interpreters Email: ges.roulstone@ Tel: +1 - 519 - 372 0887 Bartimeus Email: barbara. Development Network Siblings Network sense.org.uk Fax: +1 - 519 - 372 0312 Tel:+31-343-526650 [email protected] Mirjam Leusink Sabine Kersten Email: [email protected] Fax:+31-343-526798 Catherine Woodtli CHARGE Network Email: [email protected] Koningsbeemdstraat 3 Email: [email protected] DENMARK SZB Taubblinden- und David Brown Latin America Network Lommel B 3920 Birthe Laustrup Pieter Hermsen Hörsehbehinderten-Beratung California Deaf-Blind Services, Sandra Polti Belgium Videnscenter For Dovblindfodte Kalorama (Rehabilitation) San Francisco State University, Email: Tel/Fax: +32 11 53 35 93 Tel: +45 - 98 - 155313 Tel:+3124 684 77 77 Tel: + 41 (0) 41 228 62 23 1600 Holloway Avenue, [email protected] Email: [email protected] Fax:+31024 684 77 88 San Francisco, CA 94132-4201, Fax: +45 - 98 - 155323 Fax: + 41 (0) 41 228 62 25 [email protected] Tactile Communication Email: [email protected] Email: [email protected] Email: [email protected] USA Multiply Disabled Working Group Marianne Disch [email protected] Tel: +1-415-239-8089 UNITED KINGDOM Visually Impaired Bernadette van den Tillaart Nordic Staff Training Centre for Fax: +1-415-239-0106 NORWAY Kate Lockett European Network 15175 Prairie Road Deafblind Services Email: [email protected] Evabritt Andreassen Sense East Kent Lundkvist South Solon Tel: +45 – 96 – 47 16 00 Regional Resource Centre for Tel: 01778 - 344921 Communication Ekeskolan Resource Centre OH 43153, USA Fax: +45 – 96 – 47 16 16 Deafblind/VKS Fax: 01778 - 380078 Network Box 9024, S-70009, Orebro Telefax: +1-740-426-6728 Email: [email protected]; Tel: 0047 - 55 - 92 34 85 Email: [email protected] Jacques Souriau Sweden Email: bernadettevanden [email protected] Fax: 0047 - 55 - 92 34 91 Alan Avis CRESAM Tel: +46 – 19 – 6762 151 [email protected] Preben Gundersen Email: evabritt.andreassen@ La Rivardière Sense South East Fax: +46 – 19 – 6762 210 Usher Network Dovblindcentret statped.no 52 rue de la Longerolle Tel: +44 208541 1147 Email: [email protected] Carol Brill Tel: +45 - 99 - 31 89 00 86440 Migne-Auxances, France Tonhild Strand Hauge Fax: +44 020 8541 1132 147 Meadow Grove Fax: +45 - 99 - 14 73 44 Tel: +33 – 5 – 49 43 80 50 Nordic Culture Skadalen Resource Centre Email: [email protected] Dundrum, Dublin 16 Email: [email protected] Fax: +33 – 5 – 49 43 80 51 Network Tel: +47 - 22 - 703 702 Eire VENEZUELA Email: Lone Poggioni Vibeke Faurholt Fax: +47 - 22 - 703 715 Emails: Danish Parents Association Email: [email protected] Maria Luz Neridetroconis [email protected] Via G. Deledda, 19 SOCIEVEN, Sordociegos de 06074 Ellera (PG), Italy [email protected] Graeswangen 4 Knut Johansen [email protected] Venezuela, Asociacion Civil Telefax: 0039 075 5179 413 Usher Syndrome Study 9330 Dronninglund Andebu Døvblindesenter Tel: +58 212 9911037 Congenital Email: [email protected] Group (USSG) Tel: +45 -98 -854 332 Tel: +47 - 33 - 438700 Fax: +58 212 9911725 Deafblindness Network Fax: +45 -45 -859 969 Fax: +47 - 33 - 438720 Rubella Network Mary Guest Email: [email protected]; Dominique Spriet Sense Ole Mortensen Email:[email protected] Nancy O’Donnell [email protected] 30 Rue Barbes 11 – 13 Clifton Terrace Information Centre for Acquired [email protected] Helen Keller National Center for F-93600 Aulnay/Bois, FRANCE Finsbury Park Deafblindness Deaf-Blind Youths and Adults Anne Lise Hoydahl Tel: +33 – 1 – 48 69 68 64 London N4 3SR Tel: +45-44-85 6030 141 Middle Neck Road AKS(Andebu Kompetanse- Fax: +33 – 1 – 48 69 68 64 UK Fax: +45-44-85 6099 Sands Point , NY 11050, USA & Skolesenter) Email: spriet. Tel: +44 – 20 – 7272 7774 Email: [email protected]; tel: 516-944-8900 x326 Tel: +47 33438674 [email protected] Fax: +44 – 20 – 7272 6012 [email protected] Email: [email protected] fax: 516-944-7302 EDbN vp: 516-944-8900 Email: [email protected] FINLAND SINGAPORE Ricard Lopez Email: [email protected] Heikki Majava Koh Poh Kwang APSOCECAT & APASCIDE The Finnish Deafblind Singapore School for the Visually C/ Almeria, 31 ATIC Association Handicapped ESP-08014, Barcelona, Spain Tel: +358 - 9 - 54 95 350 Tel: +65 - 2503755 Tel: +34-678-712-619 Fax: +358 - 9 - 54 95 35 17 Fax: +65 - 2505348 Fax: +34-678-782-600 Email:heikki.Majava@kuurosokeat. Email: [email protected]

68 • DbI Review • JULY – DECEMBER 2006