From Isolation to Inclusion Eafblind International Was Formerly Known Das the International Association for the a Message from the Education of Deafblind People

Number 43 • January – June 2009

From isolation to inclusion eafblind International was formerly known Das the International Association for the A message from the Education of Deafblind People. DbI Review appears twice yearly, the two president editions are dated January-June and July- December. Dear Friends and The editor will be pleased to receive articles, Colleagues news items, letters, notices of books and s you are in the process information on forthcoming events, such as conferences and courses, concerning deafblind A of reading this message children, young adults and older people. you are probably preparing Photographs and drawings are welcome; they for your well-deserved will be copied and returned. summer holiday or, in some All written material should be in the English cases, winter holiday. language and may be edited before publication. Within Deafblind It should be sent for publication to arrive by the International many changes date below. will be taking place in Opinions expressed in articles are those of the upcoming months. the author and should not be understood as These changes reflect our representing the view of DbI. commitment to the new I would like to take this DbI Review is also available on disk. If you are strategic plan and are being opportunity to mention just interested in receiving your copy in this format, please contact: developed with the support a few of my activities this of our membership at all year. Firstly, an extremely DbI Secretariat PO Box 143, Burswood levels. Your Management interesting conference WA 6100, Australia Committee and Council discussed Rubella Syndrome Telephone (08) 9473 5422 will be meeting during and the consequences during Facsimilie (08) 9473 5499 the European Conference the lifeline of those affected TTY (08) 9473 5488 in Senegallia, Italy, and by this virus. It was good reporting further to to see so many passionate the General Assembly. people sharing ideas, worries, Concerning this conference, solutions and knowledge. I sincerely hope that (report on page 39). Editor many of you will be able In Italy, in April, the Eileen Boothroyd to attend this unique European Society for Design Geoff Dunn occasion for sharing, Mental Health and Deafness Distribution and DbI Membership learning and networking. organised a special interest DbI Secretariat More information about group meeting. In fact, DbI Website the content of the network participants showed an Eileen Boothroyd and The Secretariat mornings has been posted interest in the possibility of Editorial Office on the conference website forming a European network Sense 101 Pentonville Road and DbI website. Do visit the in this area. This is a very London N1 9LG website! welcome development. United Kingdom One of the outcomes A delightful part of our Tel: +44. 0845 127 0060 of the strategic plan is to job is the celebration of Fax: +44 0845 127 0061 identify the roles needed success on all levels. Earlier Email: [email protected] by ManCom and Council to this year we were present http://www.deafblindinternational.org ensure future projects and at the 30 year anniversary functions. We are in the of Blindeninstitut in Cover: Presentation at the National Conference on Deafblindness, New Delhi, 2009 process of discussing the Würzburg/Germany. Many profiles of the people and/or invited guests were there agencies which could have a to acknowledge those leading role in furthering the involved in this achievement. goals of our association. Following this event the DbI

LAST COPY DATE FOR YOUR NEWS: 20 October 2009

2 • DbI Review • Ja n u a r y – Ju n e 2009 communication network procedure on our website. CONTENTS organised a two day seminar I have just been told of the A message from the President page 2 for the host country. This passing of one of Deafblind Editorial and contents page 3 was an unforgettable International’s founders. Joan Articles experience for all of the many Shields from England, gave The sensory integration perspective and what participants. much of her life working it offers us in the field of deafblindness May I take also this with deafblind children, their David Brown pages 4-9 moment to remind you think families and professionals in Out of isolation and into society about nominating someone the field. Our thoughts are Ursula Heinemann and Barbara Latzelsberger pages 10-11 special for an award. We like with her family at this time. Sighted-guide techniques to show our appreciation to …and again thanks to Sharon Barrey Grassick and those who have shown so all of you for making what Mike Steer pages 12- 15 much passion, dedication and sometimes seems to be APASCIDE – the Spanish Association commitment over the years. impossible… possible. of Parents of Deafblind People You will find the information Dolores Romero pages 18-19 about the awards nomination William Inauguration of Marleen Janssen Ton Visser pages 20-21 Developments in deafblindness in Burundi Jacques Souriau page 22 EDITORIAL ICEVI report Larry Campbell page 31 Dear friends appear: Shazia demonstrates Helen Keller International Award Another packed magazine – her developing literacy in an Graeme Thomson pages 32-33 with, I hope, something for insightful piece from Dipti Music means so much… everyone. Karnad in India and we hear Russ Palmer page 34 In spite of the gloomy from Leonie, a talented and CHARGE syndrome – providing better support economic times affecting us reflective young woman, who Gail Deuce pages 35-37 all worldwide we continue stars in a short documentary Shazia has Dreams: do you know what they are? to press forward to ensure film that can be viewed on Dipti Karnad pages 44-48 that the rights of deafblind the web. You will feel inspired. Ghana commits to inclusive education people, and the services There is continuing Nina Akuokor pages 50-51 they require to live full lives, progress toward the right to Voelen – a documentary film page 52 are provided and respected. effective education from both The Dayadan orphanage, Kolkata The evidence is here in the India and Africa and we have Rodney Clark page 53 commitment and optimism exciting news from parents in Inclusion in India of our contributors! Spain. Our partner ICEVI also Akhil Paul page 54 We have David Brown’s final reports admirable progress Mental Health Seminar pages 55-56 article in his series about “the in its campaign for education Network News pages 32-34 senses”. What a wonderful for all. Regional News response we have had to I mentioned in the last Australia, Romania, Germany, them – and many requests magazine that a group of India, Brazil, Ireland, Canada pages 24-30 to translate and reproduce! information professionals Conferences and Courses These articles will appear, with from DbI has given 7th DbI European Conference page 16 many others, in a new section time and energy to the 8th Australian National Deafblind for members on the website recommendations from Conference page 17 which will have the archived the new strategy about WFDB 9th Helen Keller Conference page 23 articles from previous editions information. I am really DbI Communication Network – of the magazine. Sharon grateful to them and there is pre-conference seminar – Italy page 42 and Mike from Australia a brief report included here. DbI Communication Network have explained with great Thank you again for being Course – Paris 2010 page 43 clarity and insight the role of in touch and sharing your 2010 Deafblind Holiday page 49 sighted-guide. It informs from ideas! Secretariat and Membership News all points of view! Strategic Planning update Two powerful stories about Eileen Gill Morbey page 57 exceptional young woman Secretariat News Elivira Edwards and Bronte Pyett page 58

Ja n u a r y – Ju n e 2009 • DbI Review • 3 The sensory integration perspective

The sensory integration perspective and what it offers us in the field of deafblindness

David Brown from California DeafBlind Services concludes his article

Adapting the therapy the occupational therapist deafblindness some of the approach to allow for feels unable to assess a child most commonly encountered deafblindness with no language, whose indicators of sensory inner drive might be low, integrative dysfunction are, Whenever I recommend whose awareness of external for example, behaviours like: a Sensory Integration stimuli might be very under- l seeking very strong evaluation for a child I developed, whose movement sensory inputs like self- tend to call it “a Sensory abilities might be very biting or scratching, skin Integration-type approach”, limited, or whose processing picking, spinning, rocking, time might be extremely bouncing, shoulder long. Sticking closely to shrugging, leg swinging, the classic approach will hyperventilating, hand not work at all for most flapping, self-slapping, children with deafblindness. light-gazing. Significant adaptations l sensory defensiveness (such will need to be made to as always withdrawing the assessment procedures from touching soft and also to the way that textures, or turning the the therapy program is eyes away from light). introduced to the child, l abnormally low or high but it is perfectly possible pain thresholds (such as to adhere to the principles rejecting certain sensory laid down by Jean Ayres inputs as if they are even when working with a painful, but apparent child with the most severe non-awareness of certain multi sensory impairments. other sensory inputs If the child is not actively which for others might be seeking and rejecting sensory painful, and never crying or inputs by themselves then seeming to hurt whatever the assessment will need to happens to them). involve administering certain l apparent variability or stimuli to the child to see and I also suggest that inconsistency in sensory what happens. perception abilities (like ideally it should be instigated When requesting a sensory by a trained occupational rejecting all textures in the integration evaluation it is mouth apart from pureed therapist if this is possible, very helpful to the therapist although it can take a food, but mouthing of all to have a list the precise kinds of non-food items long time to locate and behaviours that have lead involve a suitably trained e.g. stones, wood, cloth, to a suspicion of sensory soil, or the absence of therapist. I stress the need integrative difficulties so for flexibility and creativity chewing and biting on that they will be helped to solid foods, but excessive and teamwork otherwise know in advance what at the Sensory Integration chewing and biting on least some of the key issues non-food items, often with Therapy approach may not might be. With children with be productive, especially if persistent teeth grinding).

4 • DbI Review • Ja n u a r y – Ju n e 2009 The sensory integration perspective

l unusual postures (like l inconsistent or other people involved with Above: Anders needing regular periods inappropriate use of the child so that we might horizontal or upside down, pressure when touching or be able to help them with twisting the limbs tightly grasping with the hands, the “flexibility and creativity” around each other, or often described as the referred to above, since always needing to have the child being very ‘rough’ or they have not been trained head supported). ‘clumsy’ or ‘aggressive’, to use this approach with l distractibility. and generally poorly children with deafblindness. l persistently disturbed sleep graded movements. It is reasonable to expect patterns. a therapist to take up this suggestion since an interview l problems with regulating Of course any one of arousal levels (often too these behaviours could be with family members and drowsy or too over-excited, the result of other causes others who know the child and maybe alternating than sensory integration well forms an important part extreme over-activity with dysfunction, so it is important of the ‘sensory history’ part extreme burn-out). to remember to observe over of classic sensory integration time and to share and discuss assessment. l in the early years, extreme In the meantime, while postural insecurity when observations with others to we are waiting for therapy placed in a sitting or develop an agreement on input, I am very likely to help standing position by an the best way to proceed. the family and members adult, or when moved But the existence of several of the child’s professional unpredictably, but of the types of behaviour team think about the child in pleasurable responses to on this list would strongly multi sensory terms derived strong rhythmic movement suggest sensory integration from Ayres’ ideas, then look experiences (e.g. rocking, difficulties. for activities and inputs bouncing, swinging) if the I always suggest that if that seem to help with the body and head are well an occupational therapist concerning behaviours, along supported. is approached they should feel free to speak to me and with all the appropriate

Ja n u a r y – Ju n e 2009 • DbI Review • 5 The sensory integration perspective

cautions about the need to Sensory Integration This kind of sensory go carefully and the need Dysfunction integration perspective might to OBSERVE to see what is be needed, regularly or Sensory integration happening as a result of what periodically, throughout the dysfunction appears to is being done. The ideas that individual’s life and should be very common in the I recommend are very often never be automatically population of children activities used in ‘classic’ regarded as a one-time ‘fix’. with deafblindness, and Sensory Integration Therapy Experience strongly suggests significant difficulties caused (eg. deep pressure massage, that every person with by impaired and poorly rhythmic joint compression, deafblindness would benefit modulated sensory systems a range of large movement from having a regular sensory are very common. Many activities, the use of weighted integration assessment behaviours, some of them clothing). Doing these things and program under the apparently contradictory, carefully with a child while supervision of a suitably like those I have already you observe meticulously to qualified occupational mentioned, could indicate see what happens to them therapist. the need for sensory as a result, both during the Many children with integration assessment session and afterwards, is deafblindness need extended and treatment by a trained valuable research for the time to process information, occupational therapist. highly complex and varied and often develop techniques Some typical ideas population of children with that they use to establish Anders and suggested by a therapist whom we are working these a firm physical, emotional, his intervenor, following a sensory days. perceptual, and cognitive Nirtin integration assessment “base” each time before include brushing protocols, they respond. Successful rhythmic joint compression, teaching frequently depends deep tissue massage, vibro- on allowing for this need tactile input, sucking and and spending some time blowing activities, textured alerting the child to the fact and/or heavy bed clothing, that you are there, who you Lycra clothing for extra are, what you are going pressure input, a range of to be doing together, how large movement activities and where it will be done, like swinging spinning and so on. The child may or rocking, and the use need considerable time, and of weighted clothing. assistance, in establishing a A variety of outcomes secure and stable physical might be anticipated base as a first priority in every from implementing these communicative interaction. techniques, including improving the child’s ability to notice and attend to Anecdotes sensory information in the The following anecdotes environment, improving of children with CHARGE muscle tone, improving syndrome are examples awareness and tolerance of of behaviours that touch, improving attention were considered to be span and decreasing “challenging” by family or distractibility, reducing school that were solved or the need for self-injurious avoided, or moved to the behaviour, improving sleep non-challenging category, by patterns, and generally taking a multi sensory view, increasing the child’s ability based upon our knowledge to remain both alert and of all the sensory difficulties calm in stressful situations. associated with CHARGE. In

6 • DbI Review • Ja n u a r y – Ju n e 2009 The sensory integration perspective

many of these examples there and over-aroused by refused to sit on the floor Making a salad was a clear need for sensory incidental touch and air with the rest of her class to integration assessment and movement caused by watch the teacher sign a programming along with the people repeatedly walking story. Her missing vestibular other strategies mentioned: behind his chair. Once his sense, low muscle tone, l A young child who was chair was placed with its and poor tactile and said to be self stimulating back securely against a wall proprioceptive feedback “all the time” was actually he was less self-abusive and made unsupported floor practicing and developing more amenable to social sitting an insecure and his mobility and orientation interaction. exhausting posture for her, skills, and using vision and l People were concerned which demanded all the touch to explore objects, when a young boy began energy and attention that very creatively. While doing to insist on the unusual she wanted to put into this he needed to get onto idea of wearing band-aids following the story. When his back on the floor to wound tightly around the an appropriate chair was reorganize his sensory tips of all his fingers and provided the student sat system with brief episodes thumbs every day. He was and attended with great of limb shaking and hyper- expressing his need for interest and a growing level ventilating every 10 to 20 more and stronger pressure of participation. minutes. and tactile inputs as a part l Many children who were l A child in kindergarten of his sensory diet. unable to sit on a regular was often self-abusive l Every morning in a pre- chair and attend to an when he got distracted school program a student activity for very long

Ja n u a r y – Ju n e 2009 • DbI Review • 7 The sensory integration perspective

showed an extended in the school gym in winter, Sensory modulation, attention span and better but was unwilling or enhancing, inhibition visual, fine motor, and unable to play it outdoors When our sensory systems cognitive functioning once when the summer came. are well modulated we can given chairs with footrests The absence of strong function effectively with all and armrests. One child vertical visual markers the many sensory messages rarely used the armrests to aid his equilibrium coming into our brains from for his arms but instead outdoors (remember the the world around us. But the sat with his legs spread Equilibrium Triad) made complex and never-ending wide and his outer thighs it impossible for him to task of having to ‘select, pressed hard against the maintain a secure upright enhance, inhibit, compare, sides of the seat, the extra position while also running and associate’ sensory tactile and pressure input around looking for and information is extremely giving him the requisite kicking a ball. The ability difficult for children with equilibrium to function to participate in such deafblindness. In particular, effectively in the upright complex physical activities it might be very hard seated position. outdoors did not develop for them to know which until significant adaptations sensory stimuli need their were introduced. conscious attention and l A different teenager was which do not. As a way of This is one of my favorite unwilling to go outside “ coping with this challenge during school recess aspects of Ayres’ theory and many of the children I see because of problems with are ‘one-thing-at-a-time’ glare and photophobia therapy approach – the idea people, able to focus on that impacted mobility only one sensory input at a and orientation, as well that we all need varied sensory time, or maybe two at the as limiting his ability most, and switch their brains to participate in signed inputs at different times for off to the rest, so that the conversations. This multiple complexities of life different reasons, the way that difficulty was eventually are simplified right down solved by the provision on to basics. For these children we also need nutritional inputs tinted glasses and a sun true sensory integration visor. of food and drink might be an unattainable ” l During Orientation goal and our best help and Mobility sessions a might be to create carefully teenager was refusing structured environments for l A girl was described as to stand still to receive them within which they are very disruptive during spoken/signed instructions, supported in this process of sessions that required but the problem was solved simplification. Minimizing the class to sit still and when the student was distractions and removing participate in a signed allowed to stabilize himself competing sensory inputs lesson with the teacher for by leaning against a pole is an obvious first resort up to 30 minutes. When or a tree or a wall, or by to use with these children, the teacher used a strategy placing one hand on the and, although we never say of asking the student to instructor’s shoulder during ‘never’, this simplification move periodically to carry these conversations. may become a life-long need, out small chores during just as it is to some extent for these sessions (to fetch a I want to conclude by all of us. pen, open a door, bring a talking about a few aspects book, take a paper to the of sensory integration Sensory diet school office) the disruptive that are especially relevant This is one of my favorite behaviours largely ceased. to many of the children aspects of Ayres’ theory l A teenager enjoyed, and with whom I am currently and therapy approach – the was quite good at, soccer working.

8 • DbI Review • Ja n u a r y – Ju n e 2009 The sensory integration perspective idea that we all need varied Experience strongly suggests that every person sensory inputs at different “ times for different reasons, with deafblindness would benefit from having the way that we also need nutritional inputs of food a regular sensory integration assessment and and drink. The idea helps us to see children’s behaviours program under the supervision of a suitably as fulfilling essential sensory qualified occupational therapist needs rather than just being ” ‘self-stimulating’ or ‘self- abusive’ or ‘avoiding’. Jan van Dijk taught us decades and recognizing and Ayres’ work has special ago that the best way remembering. There resonance. No one level on to begin to teach a child are different but similar the spectrum is inherently with persistent rocking descriptions of the spectrum ‘better’ than any other, each behaviour might be to join of arousal, and one that I can serve a useful purpose, them in their rocking and often use comes from the but being at some levels will even help to facilitate it to ‘Carolina Record of Infant facilitate better functioning enhance and intensify the Behaviour’, which is helpful than being at others for stimulation (in this case when thinking about different people with primarily proprioceptive and people of all ages, not just different needs and different vestibular) that the behaviour infants, and it shows the goals. For example, I am provided for the child. He spectrum running from the inclined to do better with my was emphasizing the need to most alert and excited state work when I am at the ‘Fussy begin by forming a positive (Uncontrollable agitation) to awake’ or even the ‘Mild and supportive relationship the least (Deep sleep): agitation’ levels of arousal, with the child, but from l Uncontrollable agitation but I have a colleague who Ayres’ point of view the l Mild agitation needs to be at the ‘Quiet idea also facilitates better l Fussy awake awake’ level for optimal work output. I knew a child with functioning for the child by l Active awake deafblindness who was very giving them more of the very l Quiet awake visual in her behaviour and sensory inputs that they are l Drowsy so obviously seeking through functionally completely deaf l Active sleep the rocking. Both van Dijk when she was at the ‘Active l Quiet sleep and Ayres believed that the awake’ or ‘Fussy awake’ levels l Deep sleep child should be an active of arousal and had plenty of and communicating partner energy. Only when she got in these interactions, never Knowing how to identify really tired and reached the the purely passive recipient where a child is on this “Drowsy’ level of arousal of sensory stimulation, and spectrum at any given did she abandon using her the adult was to remain alert moment, knowing where vision for moving around and attentive to the child, they need to be on the and, flat out on the floor, never the mindless hand that spectrum in order to achieve attend to stimuli coming in rocked the boat or pushed a specific goal, and knowing through her hearing sense, the swing or stroked with the how we can help them to and do it remarkably well brush or whatever. move themselves, or how considering the nature of her we can move them, up or hearing loss. She reminds Level of Arousal down the spectrum, is one us of the dangers of making of the most relevant insights generalized assumptions This concept has been that we can cultivate in our about children, and that mentioned a lot throughout work with children with ‘knowing the child’ is the my presentations, and it deafblindness. This is an area best guiding principle in our offers invaluable ways of of assessment and teaching attempts to educate children thinking about children where familiarity with Jean with deafblindness. learning and attending

Ja n u a r y – Ju n e 2009 • DbI Review • 9 A new competence centre in Austria

“Out of isolation and into society”

Ursula Heinemann and Barbara Latzelsberger report a wonderful development in Vienna, Austria

ince 2007 a new Celebrating the What do we want to competence centre has opening of the new achieve in Austria? Sbeen proclaiming its Centre Our eventual aim is to existence and enthusiastically establish a competence shouting about this hardly Some facts centre or an advisory known form of disability in About 400 to 1400 deafblind centre in each one of the Austria – deafblindness – to people are living in Austria. nine Austrian provinces, enable fast and efficient help This estimation is based on and therefore offer an for people concerned. international evaluations. full national support and “Out of isolation and into But the estimated figure deafblind people of every society” – that is the aim of unknown deafblind age and their relatives to the advisory centre wants people is very high. All these be part of a national and to achieve for all deafblind facts make Austrian-wide international network. and significantly visually and networking and cooperation At the moment we are hearing impaired people between the institutions and focusing on the following key living in Austria. The multiple professionals working in this aspects: aims of the centre are to area, very important. Without - Information/ advisory provide; this high level of co-operation service/networking it will be harder to improve l competent consultancy - Cooperation across the individual lives, needs for deafblind people, their Austria and the and the overall situation of relatives, as well as for establishment of a network deafblind people. professionals - Supporting the l the establishment of an foundation and the Why do we need a Austrian wide network establishment of advisory centre of competence for l the education and centres in all provinces deafblindness? development of adequately through specialized The centre has its roots trained professionals knowledge and practical in an initiative of the guidance The project has been ÖHTB (The Austrian Relief founded by the “The Austrian Organization for People Who - Workshops and training Relief Organization for People Are Deafblind and People to build up qualified Who Are Deafblind and with Significant Vision and professionals in Austria People with Significant Vision Hearing Impairments) and - Creating a point of and Hearing Impairments”. was founded with the idea reference for Austria of improving the quality of - Public relations, life of people living with awareness training and this disability and offering a campaigning competence centre for them Furthermore we are and their relatives. A central working on an Austrian wide focus is the professionalism evaluation of the concerned of the mentoring experts and population and planning a our work is financed by the symposium and other single ministry of social affairs. events for this year relating

10 • DbI Review • Ja n u a r y – Ju n e 2009 A new competence centre in Austria

Ursula and Barbara to the topic “visually and - Intermediation of, recent press conference we hearing impairment and and companionship in, have already been able to communication”. qualification projects reach a broader public than We want to combine - Advisory and support before. theoretical elements with related to legal issues Deafblindness is a still practical work through a - Intermediation of widely unknown and invisible close collaboration with volunteers, interns and disability. We will be seeking Universities and colleges of freelancers to establish legal recognition higher education. The co- - Intermediation of in Austria. For about 1400 operation with professional assistance services, people in Austria living medical specialists is also interpreters and with this disability, this will developing. communication partners ultimately be the key to and integration into society. - Creation of suitable leisure What do we offer? Please get in touch with us! time facilities for deafblind In our competence centre people we offer the following E-mail: sinnesbehindert@ - Advisory function services: zentrale.oehtb.at in political boards, - Counseling interviews Homepage: committees for disabled with deafblind people, their www.sinnesbehindert.at people or institutions relatives and professionals (at the moment only in - Guidance in building German) We will be making our up communication and business to raise awareness possible methods across Austria and with our

Ja n u a r y – Ju n e 2009 • DbI Review • 11 Sighted-guide techniques

Sighted-guide techniques for individuals who are deafblind

Sharon Barrey Grassick, Deafblind Education Specialist WA Adjunct Lecturer, RIDBC Renwick Centre, NSW Mike Steer, Senior Lecturer, Vision Impairment, RIDBC, Renwick Centre, NSW

veryone starts life as a child, and children who later Egrow to adults, whether or not they have a disability learn about their environment as a consequence of being able to move through it. It is, then, the interaction between a child or adult and their environment that produces information about people and objects, sizes, shapes, and distances (Gense & Gense, 2004). Those authors, writing primarily about the needs in the early years, have pointed out that for typically developing children the senses of sight and hearing provide the the motivation to move about. are deafblind and adults as well, greatest motivation for exploration. As a group, learners who are with a set of foundational skills This assertion is true, of course, deafblind are quite diverse and to use residual visual, auditory for individuals of any age. Children may include those with physical, and other sensory information who can hear and see (and who cognitive, or health problems in to understand their environment will later become adults), will addition to combined hearing Gense & Gense, 2004). For use their vision and hearing to and vision losses (Gense & Gense, both the child and adult who gather information about their 2004). Some may feel insecure or is deafblind, movement is an surroundings while growing frightened when moving about in opportunity to gather sensory in understanding of their own an environment they can neither information, to communicate, and bodies and their own movement see nor hear clearly. Others might, to make choices. O&M instruction capabilities (p.1). The sight of for example, run on the athletics provides opportunities and skills toys or people and the sounds of team or use motorised wheelchairs. that can broaden the recipient’s voices or objects encourage them Some communicate with speech awareness of the environment, to move and discover. As they do or sign language, while others may resulting in increased motivation, so, they gather, recognize, and not have had enough experiences independence and safety. interpret an amazing array of in the environment to understand Orientation and mobility training sensory information. even basic concepts about that is provided to teach children On the other hand, a child environment or about objects and adults how to learn to walk who is deafblind or an adult who found in it. It is essential that through familiar and unfamiliar becomes deafblind, must learn to both children and adults who environments safely. Learning understand his or her environment are deafblind receive learning takes place in a variety of real- with minimal or distorted visual opportunities and instruction that world situations, including hall and auditory information (Olsen, facilitate purposeful movement. ways, furnished rooms, and cross n.d.). Limited sight and/or hearing Orientation and Mobility (O&M) walks. Training is time consuming, may inhibit natural curiosity and instruction provides children who sometimes risky, and limited to the

12 • DbI Review • Ja n u a r y – Ju n e 2009 Sighted-guide techniques

number of environments available may use nonverbal methods such l Body movement can give a lot to the student or client, and the as touch cues, object-symbols or of information, including the O&M Training Specialist (Inman & gestures. Some people may use following: Loge (1998). formal tactile communication - An upward movement of your Very few pre-school, school or methods such as Deafblind arm to indicate ‘up’; downward adult rehabilitation programs, Fingerspelling or Tactile Signing movement to indicate ‘down’ as Sauerberger (2008) points (reading Auslan through touch). - Stop/wait – a firm flat hand on out, specifically serve children or When using close-vision signing person’s upper shoulder adults who have both a vision or a tactile method, guiding must and a hearing impairment, even halt during communication. To Approach though this combination produces guide effectively and safely, it is unique situations requiring unique vital that the person providing l Approach slowly from the front, strategies and solutions. Instead, sighted-guide be familiar with at eye level if possible. people who are deafblind must the person’s preferred individual - Wave your hand – a moving seek services from programs that communication method and hand and arm may be noticed serve either (a) deaf people or (b) any other individual needs, e.g. even by someone with very low blind people and which usually Some people may have balance vision. have staff who are prepared only issues that must be taken into - This gives the person the to serve one or the other. The consideration. opportunity to use whatever frustrations and fears that this functional vision there may be. situation causes both professionals Sighted-guide for people l Say person’s name, eg. “Joe, hi.” and deafblind people are legion. who are deafblind - This gives the person the The purpose of this article, opportunity to use whatever The following guidelines may need therefore, is to provide easy to functional hearing there may to be adapted to suit individual understand guidelines in the hope be. preferences and situations. Note: that they are useful to staff in do not assume that a person - Identify yourself, eg. “Sharon residential settings and specialised knows these techniques; they here.” employment programs, as well as might need to be taught: l Place your hand on back of to family members, on ways of person’s hand to enable person ensuring that their clients or family to locate where you are. member with a dual disability Communication l Introduce yourself using the better cope with the challenges l Remember, guiding must halt person’s preferred method of presented in safely negotiating for any close-vision or tactile communication. their environments communication. l Communicate any environmental Safely guiding a person changes or hazards. Offer who is deafblind l In an emergency, act quickly and l Offer sighted-guide by placing explain afterwards. the back of your hand against Guiding a person safely from the back of the person’s hand. one place to another is called - Person will respond to your l Some people who are deafblind, ‘sighted-guide’. Safely is the key sudden body movement of depending upon individual word. Providing sighted-guide either stopping or moving eye conditions such as ‘night for a person who is deafblind swiftly in another direction. blindness’, may not require uses the same basic techniques as - You may wish to decide upon sighted-guide during the sighted-guide for a person who is an emergency signal, such as daytime; however, at night or blind or vision impaired. However, an ‘x’ made quickly on hand in changing light conditions, there are distinct and important or arm; however, in reality, an they may welcome the offer of considerations, particularly in emergency requires immediate sighted-guide. regard to communication, as a action. person who is deafblind may not l Establish how much additional be able to hear or hear clearly environmental information is Grip enough to follow verbal directions. required by the person. l If the person wants guiding s/he Many people who are deafblind l Communicate any interruptions. will run a hand up your forearm have unique and personalised - E.g. a person stopping to say and grip your arm just above the communication systems; some ‘hello’ elbow, with their thumb on the

Ja n u a r y – Ju n e 2009 • DbI Review • 13 SubheadSighted-guide here techniques

outside of your arm and fingers on inside of your arm, forming a ‘C’ grip. l The grip needs to be firm, but not too tight, so the person can easily feel and follow your movements. l The person may have better hearing or vision on one side than the other and therefore may show a preference as to which arm to grip. - Establish which side is preferred.

Stance l The person being guided relaxes his/her arm at a 90 degree angle, method of communication. rail first, then moving your hand close to the side of their body l Person should be on hinge side away to enable person’s hand to of the door. make contact with rail. l As the sighted-guide keep your arm relaxed, by your side; this l If not, change arms by placing l Remain one step ahead and stance naturally places the your guiding arm behind your proceed together naturally. person a safe half-pace behind back then offering your other l Pause again at top or bottom you. arm behind your back; person before proceeding. then changes to other side. Pace l Open the door and Getting into a chair communicate, using hand- or seat l Establish the person’s preferred under-hand, for person to hold l Make contact with back of chair walking pace, particularly as door until you have both gone with your hand first then move many people who are deafblind through, then person shuts the your hand away as person makes may have difficulties with door behind. balance. contact. l Person may move their hand Curbs Narrow places down your arm to locate chair, or l Communicate that a curb, step you may offer your hand under l Before going through doorways, or slope is ahead, and if up or his/her hand to direct, again with aisles and other narrow spaces, down. your hand making contact with move your guiding arm in a l Approach ‘square on’, with toes the chair first. definite movement to the centre almost touching curb/step. of your back and the person will l If there is no chair back or it is l Pause briefly before stepping up straighten his/her arm and fall in a bench, alert person to wall or down. directly behind you. behind to avoid banging head; this can be done by offering - Some people may feel more other hand under theirs to locate secure by placing their other Stairs wall. hand on your shoulder l Communicate that stairs are l When through the space, return ahead, and if up or down; you your arm to original position at may communicate how many Getting into a Car your side; person will respond by steps or if there are ‘many’. l Same as above; you make returning to position half a pace l Approach step/curb square-on. contact with door handle first, behind. l Pause briefly before stepping up then person can open door. or down. l When door is open, offer your Opening doors l Using hand-under-hand, guide hand under the person’s free person’s hand to rail, with your hand to guide to roof of car, then l Communicate that a door is to back of car seat. ahead, using person’s preferred hand making contact with the

14 • DbI Review • Ja n u a r y – Ju n e 2009 Sighted-guideSubhead techniques here

person; or if person has limited or no formal language, check with a carer. l Offer your hands under – do not manipulate or take control of person’s hands. l A hint: Keep your hands free – use a small back pack or bum- bag instead of shoulder bags which can slip or create a barrier. l Note: Some people who are deafblind may not have learned the techniques described in these guidelines; some people may prefer linking arms or placing their hand on your shoulder. - Respect individual preferences. Time with the item first, then move your hand away as the person l Allow extra time as stopping to Conclusion communicate environmental makes contact with it. For all of these modifications the information by tactile methods l This hand-under-hand method key, as Marx, (2004) has pointed will take longer. offers greater independence to out, is repetition. Remember, the person. l Rushing or running to catch a Rome was not built in a day. Those bus or train is too dangerous, you seek to assist will need these particularly if there are difficulties General guidelines modifications routinely in order with balance. l Safety is the key issue, so to gain understanding of their - Pay attention! purpose and meaning. May these Hand-under-hand l Do not assume a person knows initial modifications assist you in l When guiding to a chair or these techniques; they may need teaching your clients or family to reach an object such as a to be taught. member to develop to the fullness cup, offer your hand under the l If in doubt about individual of their O&M potential. person’s hand; make contact needs or preferences, ask the

References: Association for the Blind of skills to deaf-blind children using Sauerburger, D. (1993). Western Australia (2008). How to computer generated simulated Independence Without Sight Guide a Blind Person Safely. Perth, sound environments. Disability or Sound. New York: American WA: Authors Information Resources. Retrieved Foundation for the Blind. Barrey Grassick, S. (1997). 26 October 2008 from: http:// Sauerberger, D. (2008). Orientation Deafblindness: A Training Package www.dinf.ne.jp/doc/english/Us_Eu/ and mobility for deaf-blind people. for Support Providers. Project conf/csun_99/session0242.html Health Care Industry. Retrieved funded by Disability Services Marx, M. (2004). Orientation and 26 October 2008 from: http:// Commission and Lotteries mobility training for students who findarticles.com/p/articles/mi_ Commission of WA. are deafblind: Going beyond the m0842/is_n3_v23/ai_20618731 Gense, D.J. & Gense, M. (2004). Blue Book. See/Hear Newsletter. Retrieved 26 October 2008 from: The importance of orientation and The assistance of the following mobility skills for students who http://www.tsbvi.edu/Outreach/ seehear/summer04/deafblind.htm in preparing this article is are deaf-blind. Deaf-Blind Link. gratefully acknowledged: Retrieved 27 October 2008 from: Olsen, T.R. (n.d.). Orientation to http://www.dblink.org/lib/o&m.htm deaf-blind. Retrieved 26 October Robin Hamilton, Speech Therapist, Western Australia Inman, D.P. & Loge, K. (1998). 2008 from http://www.geocities. Teaching orientation and mobility com/dblnj/dbreport.html Bronwen Scott, O & M Instructor

Ja n u a r y – Ju n e 2009 • DbI Review • 15 SubheadConference here

DbI DEAFBLIND INTERNATIONAL

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

22nd to 27th September 2009 Senigallia, Italy

BOOK NOW!

www.dbiconference2009.it

16 • DbI Review • Ja n u a r y – Ju n e 2009 SubheadConference here

Able Australia presents the 8th National Deafblind Conference “Deafblindness in Australia – New Ideas, Directions and Solutions” 28-30 April 2010, Melbourne

Able Australia Services is proud their families in order to have The conference will be an to be hosting the 8th National influence on the development opportunity for all participants to Deafblind Conference – a major of policies that support and discuss priorities and actions for calendar event for people with strengthen their roles in the the future in order to address this deafblindness, their families and community. critical situation. service providers – on behalf of According to the social The 2010 Melbourne Conference the Australian Deafblind Council policy research group Access is a must for people with (ADBC) in Melbourne, 2010. Economics,“there are currently deafblindness, their families and The 2010 Melbourne Conference in excess of 288,000 Australians carers, Australian governments, will present the latest news, with dual sensory impairment policy makers, experts in the research and developments in Australia and many of these disability and aged care fields, relating to deafblindness and individuals have high complex health professionals, social health provide networking opportunities support needs, often requiring innovators and academics. among people with deafblindness, high cost care”. The number of People with deafblindness their families, industry experts deafblind Australians is predicted will have access to mobility and medical professionals, as to rise dramatically in the future, and communication support well as showcasing the latest in with nearly three million people including interpreters, note takers, technology, products and services. [or 9% of Australia’s population] captioning, and access to support The 3-day Conference aims to estimated to have dual sensory staff and volunteers throughout explore new ideas, directions and impairment, or a sensory the conference to ensure inclusion solutions on how best to support impairment with another form of and full participation in all people with deafblindness and disability, by 2050. activities.

Date: 28-30 April 2010 Location: Jasper Hotel, 489 Elizabeth Street, Melbourne, AUSTRALIA Attendees: 200-300 delegates are expected from around Australia and overseas, including people who are deafblind, carers, State and Federal Government officials, disability/deafblind industry groups and suppliers, and medical professionals working in the field of disability support services. For further information please contact: Patricia Karagiorgos Able Australia Events Coordinator P.O Box 1213, Camberwell Vic 3124, AUSTRALIA Tel: + 61 3 9861 6255 Fax: + 61 3 9882 9210 TTY: + 61 3 9882 6786 Email: [email protected] www.ableaustralia.org.au

Ja n u a r y – Ju n e 2009 • DbI Review •17 Spanish Association – APASCIDE

The Spanish Association of Parents of Deafblind People (APASCIDE) shares news with us…

Dolores Romero, Chairman, writes…

ince establishing the Building the Day these two centres in Sevilla. Association our aim Centre and the First We expect the Day centre Shas been to offer Residential Centre for to be up and running this services and opportunities year and the residential for deafblind people in Spain congenital deafblind centre in 2010. The Day and to collaborate with young and adults centre will be adapted families from other countries. Part of our dream for our to meet the needs of the From the beginning one of children was to have a place deafblind people, providing our biggest projects was to where they could live more a comfortable environment improve the quality of life for independently and this has with plenty of space. It our children without losing now become a reality. will include vocational our vision for their future. In September of last year workshops, an organic farm, the Vadecon Construction gym, physiotherapy and an Company started to build indoor swimming pool.

18 • DbI Review • Ja n u a r y – Ju n e 2009 Spanish Association – APASCIDE

Summer Camp 2008 I also wanted to share with you some of the activities that took place at the summer camp in Jaen last year. It was an extraordinary experience with many activities taking place such as canoeing, horse riding, arts and crafts and climbing. Being at one with nature was a wonderful experience.

Fundraising Events Finally, we had the opportunity to organise a fundraising day in Madrid where the Queen of Spain performed the opening ceremony. We had a very busy and exciting 2008 and we are now looking forward to an even busier and more exciting 2009. We continue to aim to get the best for deafblind people as well as improving the quality of their lives. If you would like more information about APASCIDE please go to www.apascide.org. or blog on www.apascide.es/blog

Ja n u a r y – Ju n e 2009 • DbI Review • 19 Inauguration of Marleen Janssen

Inauguration of Marleen Janssen to the Chair of congenital and early acquired deafblindness

Congratulations this university Marleen has the DbI Network group on Marleen! assumed, as a professor, Communication has played the learning assignment to a leading part. As many On February 17th a large advance the education and people know, this Network number of people had research on behalf of people group started its activities travelled to Groningen, in with congenital or early in the early part of the the north of the Netherlands, acquired deafblindness. nineteen nineties. For many to witness the inauguration A long history has preceded years study meetings of the of Marleen Janssen at the the establishment of this members of this workgroup University of Groningen. At professorial chair, in which have alternated with the organization of invitational meetings, conferences and publications. At the moment workgroup members are completing booklet 4 in the series ‘Communication and congenital deafblindness’. Since 2004 the workgroup has looked for opportunities for a better way to secure, spread and, at the same time, substantiate scientifically the gathered knowledge. Underlying everything was the explicit premise that this should involve continuous international cooperation. Viataal, the former Institute for the Deaf in Sint- Michielsgestel, proposed the idea to the University of Groningen. This university proved to be prepared to give its support for education and research in this new area and to encourage cooperation with the DbI Network group on Communication and Viataal. A first result of this cooperation was the beginning of the Master degree training course on Communication and Congenital Deafblindness in 2007. In 2010 this course will Procession… Marleen on left

20 • DbI Review • Ja n u a r y – Ju n e 2009 Inauguration of MarleenSubhead Janssen here

take its fourth cohort of students. Marleen’s inauguration was a very special event – first and foremost, because of the great passion with which Marleen talked about her work and the video clips she showed! The attendance of many deafblind people, parents of deafblind children and colleagues from the Netherlands, as well as from Europe and the USA, gave this meeting a special quality as well. “A long history has preceded the establishment of this professorial chair, in which the DbI Network group on Communication has played a leading part” Addressing the assembly brought into contact with each workgroup: Jacques Souriau, In her inaugural lecture, Marleen other, or even better, to work Anne Nafstad, Inger Rodbroe and particularly went into the matter together to further research. Marlene Daelman, as well as by of the scientific substantiation of Marleen will be one of the colleague professors of Marleen the work that is done by many of plenary speakers during the Janssen: Jan van Dijk, Deborah us. Among other things she talked European Conference in Senegallia. Chen, Cathy Nelson and Rosanne about the research programme In this lecture she will undoubtedly Silberman. she has started. At the moment return to parts of her inaugural All in all, two engaging days – this includes five major areas of lecture and talk about her research. which will always be remembered! research that are primarily taking The festivities around the We hope this initiative and the place in the Netherlands. Marleen inauguration were concluded profile it provides will promote is exploring the possibilities of the next day with the one day the development of our field far executing parts of this research conference ‘Practice Based outside Europe! simultaneously, abroad. An overall Evidence and Evidence Based wish of the DbI Network group Practice’. The plenary sessions on Ton Visser is to help the various universities this conference were provided DbI Network Group on that do research in our field to be by the members of the DbI- Communication

Ja n u a r y – Ju n e 2009 • DbI Review • 21 SubheadDevelopments here in Burundi

Developments in deafblindness in Burundi: an update…

Jacques Souriau

n the last issue of DbI review, the talents of our colleagues I described how a programme as regards body contact and Ifor the Deafblind children is participation in daily activities and developing in Burundi, in a school our know-how related to language for the deaf in GITEGA, the second development. town of the country. At the end The children are now engaged of last February, I spent again two in using elements of language Washing clothes weeks there with my wife and and the staff has a better vision Gervais Kiyakara (both educators of how the can progress. We are of Deafblind children). We looking forward to seeing how worked very intensively with our all this develop. Our plan is to go Burundian colleagues at organising back to Burundi next year to follow the programme and developing up the project. Eileen Boothroyd, specific staff competencies. the editor of the DbI Review In spite of a very difficult offered me to renew an appeal for economic situation (which makes support. it very difficult to buy enough food for the children), the three The readers who are interested and more… deafblind children who belong in helping this program can to this small programme are in contact me (jacques.souriau@ good shape and live in a very wanadoo.fr) or send money warm affective environment. These to ANPSA, 18 rue ETEX, 75018 two weeks allowed us to put PARIS, mentioning that the together our Burundian colleagues’ money should go to helping the competencies and our knowledge program in Burundi. of deafblindness. When we left the school, the context of education and living had changed a lot. In a Thanks to all. nutshell, we managed to connect Jacques Souriau Peeling a sweet potato “In spite of a very difficult economic situation (which makes it very difficult to buy enough food for the children), the three deafblind children who belong to this small programme are in good shape and live in a very warm affective environment and more… ”

22 • DbI Review • Ja n u a r y – Ju n e 2009 Conference

The World Federation of the DeafBlind 9th Helen Keller World Conference of Persons with Deafblindness WFDB – 3rd General Assembly, October 23 – 27 CRPD, changing the lives of persons with deafblindness

The UN Convention on the Rights of Persons with Disabilities, CRPD, is a human rights instrument. How can we use this instrument to ensure that the rights of persons with deafblindness are respected and enforced? Plenary sessions and the 16 workshops will cover the following themes: • What is CRPD and what does it mean for persons with deafblindness? • How can organisations work towards ratification of CRPD in their country? • When a country has ratified CRPD, what changes will happen? • How can deafblind organisations and individuals use CRPD and its provisions as well as different aspects of the Convention ALSO The new African Federation of the Deafblind (AFDB) will hold its founding General Assembly The Latin American Federation of Deafblind (FLASC) will have its Annual meeting Our Hotel The venue of the conference is the 5-star fully accessible Speke Resort, Munyonyo on the shore of Lake Victoria. The venue has a large garden with waterfalls and fountains, tropical plants and birds and there is a new marina where boats can be hired. It has all the advantages of being in a gated, secure hotel with comfortable bedroom facilities, swimming pool and internet access. www.Spekeresort.com We are expecting to have 400 International participants, representing WFDB 60 member countries worldwide and 100 Ugandan participants. JOIN US! REGISTER NOW Registration for the conference can be done by filling out the registration form on the WFDB website: www.WFDB.org

Ja n u a r y – Ju n e 2009 • DbI Review • 23 SubheadCountry news here

Australia eafblind International 02 9412 9300 or email Access to Premises DSecretariat has been dgallimore@guidedogs. Standards awarded to Senses Foundation com.au The House of Representatives in Western Australia (WA) for Legal and Constitutional the next four years. Senses Access to Interpreting Affairs Committee will was formed in 2001 when Services review the appropriateness the Royal WA Institute for the As part of the 2007-08 and effectiveness of the Blind amalgamated with the Victorian State Budget, Australian Government’s WA Deafblind Association and the Government made draft Access to Premises is the primary advocate and a commitment of $2 Standards. The draft service provider for people who million over four years to standards were developed by Mike Steer are deafblind or blind with improve access to Auslan the Australian Building Codes additional disabilities in WA. For interpreting services for Board and the Australian more information about Senses Victoria’s Deaf and Hard Human Rights Commission and the Secretariat, go to http:// of Hearing communities to make public buildings www.senses.asn.au through information more accessible for people communication with mobility, vision and LIVEWIRE is a free online social technology (ICT), for hearing impairments and networking website for young example, high speed are available at http://www. people aged 10 to 18 years with broadband and video ag.gov.au/premisesstandards. a chronic illness or disability communication. The Submissions addressing the living in Australia. Members Auslan Video Relay Inquiry terms of reference are can engage in chat events, have Interpreting (VRI) due by 13 February 2009 and their say in forums and check Service will improve public hearings are likely to out all the latest in movies, communication for Deaf be conducted in March 2009. music, games etc. The website and Hard of Hearing For background information, is a closed community with chat people in a range of go to http://www.aph.gov. hosts available from 12 noon health and community au/house/committee/laca/ to 8.00pm daily. Members are settings, particularly disabilitystandards/index.htm divided into age categories hospitals, community to different sites (10 to 12, health services, Deaf and National Human Rights 13 to 15, 16 to 18) with age- Hard of Hearing services Consultation appropriate content in each. and Department of The Australian Government Every application is authorised Human Services regional has appointed an with written parental consent offices. A project to trial independent Committee and proof of ID. Operated by the an Auslan VRI Service is to undertake an Australia- Starlight Foundation, the website currently underway with wide community is at http://www.livewire.org.au. a commencement date consultation for protecting of March 2009. The trial and promoting human International Journal of will involve establishing rights and corresponding Orientation & Mobility (IJOM) VRI infrastructure at responsibilities in Australia. Edited in Australia, the first issue six DHS nominated The Committee, chaired by of this peer-reviewed journal health and community Frank Brennan, will consult has just been launched. The services in regional broadly with the community, foreword is by Jordie (Retired Victoria. Information particularly those who live Guide Dog) of Graeme Innes sheets and other forms in rural and regional areas. AM and the articles, research of communication will A consultation paper will be and practice reports cover be made available. The released, with submissions a wide range of issues. For first information sheet is to be made by 29 May more information about the available under “What’s 2009. The Committee is due journal go to http://www. New” on the Disability to report to the Australian ijorientationandmobility.com or Services website at: http:// Government by 31 July contact Dr Desiree Gallimore of www.dhs.vic.gov.au/ 2009. For more information, Guide Dogs NSW/ACT on phone disability go to http://www. humanrightsconsultation. gov.au/ 24 • DbI Review • Ja n u a r y – Ju n e 2009 Country news

Education Programme Romania Teodora Seiciuc s part of the educational programme up programme began and the national reports: Adeveloped in partnership with the trainers started to offer hands-on support Ministry of Education and Research: Special in the classroom to teachers working with Education Department, Sense International deafblind/ MSI children. This is the third (Romania) organized the second annual consecutive school year that this follow-up network meeting for the teachers working programme has been implemented. at deafblind/ MSI units in special schools in Romania. The event took place in Cluj Napoca, at Babes-Bolyai University – the Faculty of Psychology and Education Sciences, Special Education Department. The theme of the meeting was the “Application of the curriculum for deafblind children in the educational process”. In this meeting, Prof. Dr. Vasile Preda awarded the national trainers with Certificates issued by the Ministry of Education and Research, acknowledging their participation in the development of the curriculum. In November, the follow-

General Assembly of the Association of Deafblind People in Romania

he General Assembly of the Association of member of the Board of Directors. TDeafblind People in Romania took place Of the seven members elected, five are on November 7, 2008. The main topics on the deafblind people – three are from Timisoara, agenda were the annual activity report, the two are from Cluj, one from Arad and one operational plan for 2009 and the election of from Bucharest. the Board of Directors. The new president of the Association of Before elections, a moment of silence was Deafblind People in Romania is Mrs. Elena held in memory of Mr. Ladislau Tacsi, a former Gherghel from Cluj.

Ja n u a r y – Ju n e 2009 • DbI Review • 25 SubheadCountry news here

Germany Celebrating an important anniversary in Würzburg Hanne Pittroff

ounded in 1853 by Count of Bentheim- but also reflect on the challenges to come. FTecklenburg the institute for the education So, our 30 years of educational services of blind people was started in Würzburg, for deafblind people were marked with an an medieval city in the north of Bavaria. international reception here in Wurzburg. We In 1972 there was an important change invited very distinguished colleagues from in the population to be educated: blind all over Europe for this and in particular the children with additional handicaps came European Working group on Communication into the focus of education. Of course, there to support an educational seminar for people were also children with additional hearing working with deafblind people. problems amongst them and to improve their It is not very common in Germany, or educational service in 1978/79 a department in other countries, to have the chance to for deafblind children was founded. dis-cuss opportunities and requirements Right now we are looking back to 30 years for deafblind people because the numbers of education for deafblind students. Our are small and often not a high priority for specialist services include early intervention, policy makers. Therefore it is our hope to preschool and school-services, prevocational build a broad platform and to create better training and sheltered workshops as well information with and for deafblind people. as facilities for lifelong living of deafblind For this reason we really appreciated having people. The Blindeninstitutsstiftung has the members of the European working group become the umbrella of six different at our side, to be a partner in developing and institutes scattered all over Bavaria and creating new ideas and to contribute in the Thuringia. Because we have quite a conference. reasonable number of deafblind individuals We would like to thank them all for in Würzburg there are a broad range of their friendship, their friendliness and the experiences and competencies to be found confidence they showed in us. They always here. have been a very important partner for us in We felt that at this special landmark in our building up the system for deafblind children, development we should look back what we young people and adults to give them more have been doing, celebrate our achievements participating in the society.

26 • DbI Review • Ja n u a r y – Ju n e 2009 Country news

“…from Isolation to Inclusion – India for people with deafblindness”

A report of the all-India conference

s a step forward in the theme “from Isolation to Asame direction the first Inclusion - for people with ever National Conference on deafblindness”. Deafblindness was held in The highlights of the New Delhi in January 2009, conference were book which was Sponsored by releases, distinguished service the European Commission awards, and constructive and supported by Hilton/ discussions. Perkins International Program About 265 participants, (USA) and the Rehabilitation including development Council of India. Sense practitioners, policy makers, International (India) joined researchers, family members, l better access to information hands with the National educators, experts from communication technology, Institute for Empowerment related fields and deafblind Rural development of Persons with Multiple persons themselves discussed programs and Disabilities (NIEPMD), the challenges of inclusion l increased collaboration Ministry of Social Justice and shared experiences to between NGOs to avoid and Empowerment, Govt. bring deafblind persons duplication. of India. Mrs. Anne Marchal, in the mainstream. The Overall, the conference Head of Development participants stressed the served the purpose of Cooperation, Delegation of importance of designing cumulative introspection the European Commission strategies for developing on the progress made to India, Bhutan and Nepal, best practice and systematic till date and also helped inaugurated the conference follow-up for the inclusion of define the path ahead. Over and was joined by Dr. deafblindness in the disability the past few years a solid Shantikarn, Regional Director- policy and legislation of the foundation has been laid for DPR, WHO–SEARO and Maj. country. Some of the key the inclusion of deafblind Gen. (Retd) Ian Cardozo, issues that emerged during persons in e society as equal Chairperson, Rehabilitation the three day conference partners and we are hopeful Council of India. The Keynote included: that there will be a life of address was given by Mr. l the need for a proper dignity and opportunity for Rodney Clarke (OBE) and the system of certification of deafblind children. conference focused on the deafblindness/MSI; Akhil Paul

Ja n u a r y – Ju n e 2009 • DbI Review • 27 SubheadCountry news here

Brazil A Deafblind Gaucho from Brazil…

…joins the exchange program for professionals in the USA!

Alex Garcia, who is President of AGAPASM Gaucha Association of the Parents and Friends of Deafblind and People With Multiple Disabilities writes… From March, 15th to April 05th, 2009 the International Leadership, Employment and Disability (I-LEAD) professional exchange program took place in Eugene, Oregon, in the USA. This is a professional exchange program directed towards the employment of people with disabilities. The program was based on visits to centres and organizations related to work and employment and included experience of education, transportation, legislation, accessibility and public policies. The program lasted 20 days and during this time there was a lot of observation, reflection and exchange of experience. We had the opportunity to exchange ideas and information with people who represented many supporting organizations and universities and all those people spoke about successful stories concerning employment, education and inclusion of people with disabilities. People who are fight actively for inclusion Alex Garcia in their countries representing Brazil, Costa Rica, El Salvador, Guatemala and Mexico took part. from Brazil… of course A very special Mayor Participating of the program I must highlight the important presence in the program, the Mayor of Eugene, Mrs. Kitty Pierce, who was an educator in elementary school. Because of her awareness of people’s needs, she became one of the most celebrated mayors in history because she has created an accessible city – Eugene. What a fantastic record – from an educator to the mayor of the most accessible city in the world.

What relevant aspect did I see about the American way of life? The most significant thing I saw was their democratic way of living. I really could “feel” an active democracy. It’s impressive to note their constant process of elimination of inequalities through education and

28 • DbI Review • Ja n u a r y – Ju n e 2009 Country news

Making new friends respect of people to include disabled like Eugene. Accessibility is for all people. people in things which belong to all society. Investing in accessibility would help to halt They have achieved this level by thinking the progress of crimes committed by young in an intelligent way. Accessibility has people (which has been increasing) and brought equality between people and, as a would provide better facilities for young consequence of it, respect. Accessible Eugene people at school, because accessibility exports its characteristics. In Eugene, people would bring new opportunities. All this with disabilities are not afraid of showing investment would return to society twice themselves in public. They aren’t afraid to talk over. An accessible structure would cause a about the difficulties they face. chain reaction in Latin society and in Brazil – and all for the best. In relation to the advances in Eugene, what could be applied in Alex Garcia Latin societies like Brazil? www.agapasm.com.br With will power, intelligence and investment, it is possible to build our cities on a model

Discussing employment

Ja n u a r y – Ju n e 2009 • DbI Review • 29 SubheadCountry news here

Ireland Deafblind Ireland �� he trustee body of DB Ireland held �� Ttheir first quarterly meeting of 2009 in Longford in January. Prior to this 2 members had a formal meeting with the CEO of The ICEVI conference in Dublin in July and National Council for Special Education, the another training event for professionals in government body set up to oversee education November, following the very successful event to children with special needs in ROI. The held in Dublin in November 2008, where 80 meeting was to raise awareness of the unique professionals working with deafblind children needs of children with deafblindness and came to hear experts from the UK share current gaps in education provision for this their experiences and skills in working with group in Ireland. deafblind children. The trustee meeting discussed plans for events in Ireland for deafblind awareness Ges Roulstone, Chair, DB Ireland week in June, possible attendance at the

Canada CDBRA is now CDBA! Stan Munroe e’ve revised our name and our itself as the Canadian Deafblind Association writes Wlogo, but our principles and strong (CDBA). The National Board of Directors commitment to individuals who are believes that it is necessary to update the deafblind, their families and personnel image of the organization to better reflect working in the field continues to be at the the broader community of individuals who heart of what we believe and what we do. are deafblind in Canada. While we have After almost 35 years of operation as the removed “Rubella” from our name, we will Canadian Deafblind and Rubella Association always have high regard for those who were (CDBRA), the organization has rebranded the root of our inception as an organization in 1975. Indeed it was because of those individuals largely with congenital rubella syndrome that we, in Canada, developed the concept and principles of intervention, intervenor services and the network of Independent Living Residences. But today, new cases of congenital rubella syndrome are rarely seen as a cause of deafblindness in Canada, as in most western countries, thanks to the effectiveness of the immunization program. This has led to the decision to rebrand ourselves in order to demonstrate greater inclusion. Along with our new name we have modified the logo to reflect that the organization is Canadian, while maintaining its original core values; that those individuals who are deafblind, intervention and communication are at the forefront of everything we do.

30 • DbI Review • Ja n u a r y – Ju n e 2009 Subhead here

Working at both ends of the spectrum

Larry Campbell, President, International Council for Education of People with Visual Impairment

n behalf of all of us at launch their national action plan ICEVI let me extend warm to assure that children with visual Ogreetings to our colleagues impairment have equal access to at Deafblind International. It is education. Only last week ICEVI’s a privilege for ICEVI to able to Secretary General was in Vietnam regularly share information about where he reported that progress and expansion to the Philippines our work through your magazine to date is most gratifying. Over and Vietnam. Initially the project “DbI Review and I know our the past two year more than 3,800 provided technology to students members enjoy learning about regular classroom teachers have enrolled in higher education to DbI’s work through your regular received training and more than help them address one of the contributions to our magazine 13,000 visually impaired children, major barriers identified by the “The Educator”. who previously had no access to earlier research; lack of access to By now most of you are probably education, are now enrolled in information. aware of a global initiative that school. As the project has expanded we was launched by ICEVI in 2006 in have identified three additional partnership with the World Blind The EFA-VI program areas of concern shared by Union. The “Global Campaign on “ university students in all three Education for All Children with is now underway in countries: 1. the need for more Visual Impairment” (EFA-VI) is portable technology that can be working to reach the more than nine countries carried to university classrooms, 4 million children with a disabling ” 2. the need to create a more visual impairment who currently While our attention remains on welcoming environment within have no access to education. The reaching children at the pre-school the university and 3. improved primary focus of this campaign and primary level, we recognize access to specialized and technical is on reaching children at the the importance of addressing materials in Braille. pre-school and primary level by needs at all levels of the education ICEVI and The Nippon Foundation working with governments and system. With generous support are learning important lessons non-government organizations from The Nippon Foundation from this work in Indonesia, the to assure that children with visual the EFA-VI Global Campaign is Philippines and Vietnam. Within impairments (including those with currently working on an interesting the next few months our project additional disabilities) are included project in the East Asia region that partners will meet to discuss the within national “Education For involves visually impaired students next phase of this effort. It is our All” plans that currently receive enrolled in higher education. hope that over time this project significant support from UNESCO, This effort grew out of a small will not only be able to expand UNICEF and The World Bank. research project ICEVI conducted the much needed assistance to the Unfortunately, these national several years ago in our East and visually impaired students who are EFA plans often overlook the needs West Asia regions to determine its primary beneficiaries but will of children with serious sensory what barriers were being faced by lead to positive changes in public impairments. The EFA-VI campaign visually impaired students enrolled policy. Only when governments is there to change that situation, in university education. recognize and accept their and to date the results are quite Over the past three years this responsibility for providing equal gratifying. The EFA-VI program is project has grown from its starting access to education at all levels now underway in nine countries point in two major cities on the of the system can we declare that with a number of others currently island of Java, in Indonesia to “education for all” is truly a right completing final preparations to additional locations in Indonesia and a reality.

Ja n u a r y – Ju n e 2009 • DbI Review • 31 Helen Keller International Award

Artist from Helen Keller’s home State collaborates with sensory impaired people!

Congratulations Rich Curtis!

he Helen Keller Hall and Sense Scotland’s young people with sensory International TouchBase venue in Glasgow. impairment); both schools “TAward is a unique The £1500 main prize are based in Glasgow. opportunity for artists from went to Rich Curtis, from Sense Scotland Patron, the across the world to reflect on Alabama, USA (he is from the Duchess of Sutherland, made deafblindness and disability, same Shoals area where Dr presentations. through a range of artforms.” Helen Keller was born). His Judges Pauline McLean, Gillian Morbey, Chief work titled ‘Sight Unseen’, Monica Callaghan, Amanda Executive of Sense Scotland. comprises 20 textured Catto and Keith Salmon The winners of the Helen paintings on paper, and was (an artist who has a visual Keller International Award collaboration with sensory impairment), had no main and under-16 prizes impaired people. The £100 knowledge of the artists’ have been revealed at a cheque for the under 16 identities until they had ceremony in the Glasgow prize went to ‘Medusa’ a completed the judging. The Royal Concert Hall. Run large sculptural piece made Helen Keller International by Sense Scotland, the from recycled material and Award was funded and exhibition featured art that found objects, by Shawlands supported by the Scottish challenges perceptions Academy in collaboration Arts Council, ITV and of deafblindness and was with Hazelwood School Glasgow’s Concert Halls. exhibited at the Concert (a school for children and Although Rich was unable

The winning under-16 work (the wooden sculpture behind the group). The picture shows some of the U16 winners from Shawlands Academy; teachers from both schools; one of the exhibition judges, Sense Scotland’s Chief Executive Gillian Morbey and charity Patron the Duchess of Sutherland

32 • DbI Review • Ja n u a r y – Ju n e 2009 Helen Keller International Award to attend the awards he took time to answer some questions about his work.

Question & Answer with winning artist: What interested you about the Helen Keller International Award? I found a call for artists to submit work and felt the work I had been doing with the Sight Unseen project fit well with the mission and concept of the exhibition. The added coincidence of Three of the judges with Rich’s winning work. From left to right: Monica Callaghan living near Keller’s home, – Head of Education, Hunterian Museum and Art Gallery; Pauline McLean – BBC Arts Ivy Green, also piqued my Correspondent; Keith Salmon – visual artist interest. Once I researched a little about Sense Scotland, and found what an incredible long process of contacting The lack of inhibition was organisation they are, I the regional centers and inspiring to watch, and the was compelled to enter the schools, talking with freely intuitive, gestural competition. instructors, gaining their marks are so beautiful on the trust, finding clients who page. What inspired you to start were willing to participate, the ‘Sight Unseen’ project? How do you feel about I was sitting in a coffee How did you choose the being chosen as the shop and this man walked pieces of music for people winner of the Helen Keller in carrying his mobility cane. to respond to? International Award? He called out to everyone I have a large and esoteric I am truly delighted. I was in the shop that he needed collection of strange happy to participate in the a ride to an appointment. music that ranges from first place. But, to win the Someone he was familiar experimental free-improvised competition among such with volunteered before I jazz to Tuvan throat singing wonderful fellow artists was able to speak up. That to solo drumming. I makes me very pleased. I am one simple instance got me chose music that I felt the honored. thinking about working with participants would not have blind people. My original heard before, and therefore “We would like to thank idea was to ask individuals have no prior relationship all our entrants. Twelve who are blind to lead me with. I wanted the responses countries contributed 130 through their day, navigating to be immediate, not entries, many of them from their world. After some meditated, and corporeal. colleague organisations,” modifications, I developed explained Gillian Morbey.” this exercise of collecting What do you feel you Without their continued sound-response drawings. learned through this interest and support we particular collaborative couldn’t continue with this How did you choose the process? unique competition. people to collaborate with The contact and collaboration on the project? with the participants was For more information go I contacted the Alabama enriching. I am partial to to: www.sensescotland.org. Institute for the Deaf the drawings made by the uk/helenkeller and Blind, to find willing participants who have been participants. It was a year- totally blind since birth.

Ja n u a r y – Ju n e 2009 • DbI Review • 33 SubheadMusic here

Music means so much to Russ Palmer…

…“Warm Summer Days” has just been released

his CD has taken or compose his music. 1974 to 2003 with lyrics by Russ on a long and Russ and his father Peter Tchallenging journey Russ explains…. Palmer and Iiris Brocke especially if one considers Reflections was my first (A Hunter’s Cry & Warm he is Deafblind. He was demo album which I refer to Summer Days). Seven of the born severely deaf and was as “Before Cochlear Implant” vocals are performed and registered blind in 1991. He (BCI) and now this album sung by Russ with two vocals took early retirement at the Warm Summer Days should by Peter Palmer (If You Go age of 30 and decided to really be titled “After CI” (ACI) & Dreaming). There are also qualify as an international and was surprised at the two piano solos performed Music Therapist at Sibelius enormous difference in the by Russ (Mystic Lady & Going Academy in Helsinki, presentations of my songs. Home) and an instrumental Finland 1999. In 2004 he Where I was struggling track Tequila Magic had a Cochlear Implant (CI) during the BCI time to hear if performed by a Norwegian operation which enabled him I was singing in tune, getting musician Terje Johannesen. to continue his love for music the right pronunciation etc, The production, arranging, both as a composer and now I was able to focus mixing and mastering performer. He put together more on interpreting the was done by a Norwegian a musical biographical lyrics and presentation of the composer Jon Rosslund album titled Reflections in all of my vocal tracks. This who works also as a Special 2003 with his producer Jon may not appear to a hearing Teacher at SIGNO (resource Rosslund, fearing he would person to be such an issue centre for the Deaf children not be able to sing, perform but you have to remember I and adults with learning have never heard disabilities) in Andebu, normal sound only Norway. The recordings for what I have taught the CD started at Frinton- myself to hear on-Sea in the U.K. and at through my high Jon’s home studio in Norway powered hearing from the period January aids, and since – September 2003 with having the CI in selective recordings from 2004. 2006 until October 2008 Russ was when the album was finally quoted as being completed. the world’s first “Deafblind Music For further information Therapist” in 1997 contact: at a Deafblind Email: International [email protected] conference from Website: a Music Therapist www.russpalmer.com colleague. All the Or order through the Ear music is composed Foundation website: by Russ over a www.earfoundation.org.uk/ time period from shop/items/107

34 • DbI Review • Ja n u a r y – Ju n e 2009 CHARGE syndrome – betterSubhead support here

CHARGE syndrome – how can we provide better support?

Gail Deuce from Sense reports the results of a pilot project in the UK involving families and children

s the UK’s leading A small sample, but enough organisation to encourage us continue Aworking in the field to full project because some of deafblindness, Sense is interesting points arose. committed to supporting children and young people Diagnosis with CHARGE Syndrome and l 5 children were identified their families. in days or weeks with A significant number of diagnoses being made children supported by Sense by geneticists and have CHARGE Syndrome, as paediatricians, and in one do an increasing proportion case, an endocrinologist. of new referrals each month, l Of the 3 remaining children, these often being children The pilot questionnaire the youngest child in the who are newly diagnosed. A pilot questionnaire was survey was diagnosed at 8 devised and eight families months; the two remaining Finding out more approached, all of whom later diagnoses were made One the team’s working kindly agreed to complete at 9 years and 2 years and with children, the Family, it. With one exception, this were in older children in the Education and Advisory was undertaken with the sample. Service (FEAS), in the direct support of a consultant This earlier diagnosis is South East felt it would be teacher from the FEAS team. encouraging since it suggests advantageous to find out The questionnaire covered: a development in the more about the children l General information: date of knowledge and recognition themselves and the services birth, address, siblings, etc. of CHARGE Syndrome though their families receive. To l Diagnosis: using Blake et al there is some concern since do this a questionnaire (1998) Revised Diagnostic several families reported a was developed to gather Criteria, considering where, different diagnosis before information to: when and by whom the CHARGE was identified. l build upon existing diagnosis was made knowledge of CHARGE l Medication Hospitalisation Syndrome l Developmental patterns Souriau et al (2000) recognised that children with l help recognise areas of l Educational provision need (including the Statement of CHARGE Syndrome often experience lengthy periods l After analysis, the team Special Educational Needs) would then be able to use of hospitalisation following birth and during infancy. this to improve the support Synopsis of findings Sense is able to provide to 6 of the 8 children from the The participating children the children/young people, pilot questionnaire shared The initial pilot questionnaire their families, and to the this experience with the involved eight families of professionals working with period in hospital following children/ young people them birth ranging from 2 days to with CHARGE with an age 5 months, and the average range of 1.6 – 17.2 years. stay being 55 days.

Ja n u a r y – Ju n e 2009 • DbI Review • 35 SubheadCHARGE syndromehere – better support

Development – the support provided by had been made. However it The variance in the the teachers for the visually should be stressed that all of development of these impaired or teachers of the these parents were supported children shows just how deaf was variable, as was by Sense. individual each child is. the input by therapists. One great concern However, some significant – one child was not emerging from the observations were reported: supported by a Deafblind/ questionnaire was that whilst – 6 of the children were MSI teacher parents were happy with the able to walk holding on 6 – none received support support given in the early months to 1 year before from a specialist in sensory years/ pre-school provision, they were able to stand integration dysfunction. half of the parents then unsupported became unhappy with the – 1 child achieved These findings appeared provision once the children independent walking to confirm the need for were at statutory school before being able to stand flexibility and a range of age. This requires further still unsupported. provision being made exploration. This is not surprising if we available. consider the fact that sensory Follow up with the integration dysfunction Statements of participating families difficulties are now thought Educational Needs It was extremely helpful to to be inherent in CHARGE be able to follow-up the pilot (Brown, 2003). Six of the eight children in the pilot had finalised or questionnaire by meeting agreed Statements of Special many of the parents as a Pre-school support group and being able to The four pre-school children Educational Needs. Of the two children without a discuss issues further and were all receiving different highlighting action required. packages of support. Statement, the family of one had initiated the process and However all the children: Further work – had input from a teacher the remaining child was too for the visually impaired young and already receiving A revised questionnaire is and a teacher for the deaf, appropriate early input and now being prepared so that together with a specialist support. the information gained in teacher for deafblindness/ Concern was raised as: the small pilot can be built multi-Sensory Impairment l only 3 of the completed on. Some revision has been (via Sense). Statements had received made after reflecting on advice from a Deafblind/ the administration of the – had therapists involved. MSI specialist. questionnaire, parental l in all the Statements comments and new School support CHARGE Syndrome was information emerging from The four children and young identified but only half the field: people in the older group then had the implications n Hefner and Davenport required increased provision of CHARGE set out to assist (2004) criteria have to meet their individual with allocating resources replaced the earlier Blake et needs and support once they and to support school al(1998) criteria, identifying reached school age; staff with the additional those features now felt to – all four children/young information they required be the major characteristics people of this age were to meet needs. of CHARGE. It is also felt in some form of specialist these are more precise, provision (SLD school, VI, HI Deafblind/MSI teacher more easily understood and or SEN resourced provision support was included in all more manageable as part of a mainstream the Statements although n questions concerning school). the frequency of input varied. This was added at gene testing and – all were supported full- a later stage for two of the identification of the ChD7 time, although only one, by children, on one occasion gene will be included a named intervenor. after a diagnosis of CHARGE

36 • DbI Review • Ja n u a r y – Ju n e 2009 CHARGE syndrome – betterSubhead support here

n questions concerning the child/ young person is Awareness of the sensory growth hormone treatment more able. integration issues affecting and the involvement of the day to day life and an endocrinologist will be Further work on how learning of the child included to support the school with CHARGE also need years addressing. It is possible It is likely that further that once the child has There is a need to identify revisions will continue to learnt to walk and develops the reasons why the child be needed over time as compensatory strategies with CHARGE may encounter further research in this field the challenges the child is difficulties as s/he progresses continues to broaden our constantly overcoming are through the school years understanding of CHARGE. less obvious to the teacher because these factors then but just as real to the child. need to be addressed. Research has shown that Parents rate early Information needs to be education more highly this can then present in provided and pro-active ‘challenging’ behaviours in It would appear from the work undertaken to try and the classroom (Brown, 2000; response of parents taking overcome potential barriers Hartshorne et al, 2000) part in the survey that to learning in the future. Parents felt there is an appropriate early input is felt During the parental ongoing need for more to be effective in supporting discussions requests were therapists trained in sensory the child with CHARGE and made for: integration dysfunction. his/her family. n A folder of ‘Useful However, 2 of the 4 Information’ for In conclusion families of children of professionals in the UK, statutory school age were including fact sheets and This pilot study has proved a not satisfied with the child’s some medical information useful starting point in gaining more information about educational placement. n A list of professionals the children and young people Concerns were raised by diagnosing consultant will with CHARGE Syndrome and all parents that there is need to consider referring has assisted in the process of inadequate recognition of the child to, for example, identifying more clearly areas the child’s changing needs other medical professionals, for further work. over time. In addition, a therapists, specialist range of specialist provision teachers, Social Services Gail Deuce is not always available within n Guidelines for information a child’s locality and that a to be included in the mainstream placement is not Statement of Special always effective, even when Educational Needs

References

Brown D. (Published Online 2000) Hartshorne T., Hefner M., Davenport S CHARGE syndrome “behaviours”: (Published Online 2000) Challenges or adaptations? Behaviour in CHARGE syndrome: American Journal of Medical Genetics Part A Introduction to the special topic. American Journal of Medical Genetics Part A Brown D. (2003) Some behavioural implications of Souriau J., Gimenes M., Blouin C., sensory difficulties found in children Benbrik I., Benbrik E, Churakowskyi A., with CHARGE Syndrome Churakowskyi B. (Published Online 2000) CHARGE and Usher Syndrome in Europe CHARGE syndrome: Developmental and (CAUSE) Conference, Hinckley, England behavioural data American Journal of Medical Genetics Part A

Ja n u a r y – Ju n e 2009 • DbI Review • 37 Acquired Deafblindness Network Ges Roulstone Sense East Usher Study Group 72 Church Street, Market Deeping Peterborough, Lincolnshire PE6 8AL UNITED KINGDOM Marylin Kilsby reports: Tel: +01778 344 921 Fax: +01778 380 078 Email: [email protected] Website: www.adbn.org he next Usher Study Group Charge Network will take place as a pre- Co-ordinator: vacant conference seminar to the Communication Network T Ton Visser ADBN conference in Aalborg, Viataal Theerestraat 42 Denmark, in September 2010. The Sint Michielsgestel NL - 5271 GD THE NETHERLANDS Usher Study Group will run from However, moving the USG to just Tel: +31 - 73 - 55 88 111 Fax: +31 - 73 - 55 88 994 midday on Monday 27 September before the ADBN conference does Email: [email protected] until 4.30 p.m. approximately not mean that the Usher Study Congenital Deafblindness in Adults Network on Tuesday 28 September 2010. Group will be missing from the DbI Dominique Spriet QUENEHEM BP 53 Rue du Mont Saint Eloi The ADBN conference dates are European conference in Senigallia CALONNE RICOUART 62470 FRANCE Wednesday 29 September until this year. We will be taking part in Tel: +33 - 3 - 21 61 16 16 the Network morning during this Email: [email protected] Sunday 3 October 2010. EDbN The USG is for people with conference. Ricard Lopez APSOCECAT & APASCIDE Usher, their families, friends and More details about the Usher C/Almeria, 31 ATIC Barcelona ESP 08014 interested professionals. Topics Study Group in Denmark will be SPAIN available later this year, as well as a Tel: +34-678-712-619 often covered are research, Fax: +34-678-782-600 employment, technology, Usher life call for papers. We look forward to Email: [email protected] Website: www.edbn.org stories and the latest information welcoming you! Employment Network Seija Troyano about Usher. We also have a meal Nakskovinkatu 8 and 9 together and plenty of opportunity Marylin Kilsby 78200 Varkaus FINLAND to socialise and learn from each National Usher Coordinator Email: [email protected] Interpreters Development Network other. Sense Mirjam Leusink Past. Petersstraat 68 Rijssen 7462 MT NETHERLANDS Email: [email protected] Latin America Network Sandra Polti ARGENTINA Email: [email protected]; [email protected] ADbN Rubella Network Nancy O’Donnell Helen Keller National Center for Acquired Deafblindness Network Deaf-Blind Youths and Adults 141 Middle Neck Road Ges Roulstone Sands Point, NY 11050 USA Tel: + 516-944-8900 x326 he Co-ordinating group Fax: +516-944-7302 Email: [email protected] of ADBN met in London in Siblings Network February 2009 and discussed Sabine Kersten T Koningsbeemdstraat 3 feedback from the successful Lommel, B 3920 BELGIUM seminar which took place in Bergen will be having a network morning Tel: +32 11 53 35 93 Fax: +32 11 53 35 93 in October 2008. Over 200 people at the DbI European conference in Email: [email protected] attended the event (hereafter to be September 2009 and look forward Tactile Communication Working Group Bernadette Van den Tillaart called a conference) and thoughts to meeting up again with network 15175 Prairie Road South Solon OHIO 43153 turned to the next event in Aalborg members then. USA Tel: +1-740-426-6728 in 2010 (29 September – 3 October Fax: +1-740-426-6728 Email: [email protected] – Mark the date in your diary Ges Roulstone Usher Study Group now!) A conference theme was Chair Marylin Kilsby Sense agreed and initial decisions take on ADBN South East Regional Office New Plan House potential keynote speakers. ADbN 41 East Street, Epsom Surrey KT17 1BL UNITED KINGDOM Tel: +44–845 127 0076 Fax: +44–845 127 0077 Email: [email protected]

38 • DbI Review • Ja n u a r y – Ju n e 2009 Network News

The Siblings Network

he DbI European conference brother an only child”, scheduled I am proud is coming up and when you in the regular programme of the to say that Tread this we will be busy conference. Here they will present one of the finalising the programme for the some personal experiences and plenary Siblings Network morning. what role their siblings group has lectures will During this morning there will be in their life. be about presentations about several issues When I founded this network brothers concerning brothers and sisters of six years ago professionals hardly and sisters. children with special needs. We took notice of brothers and sisters I hope to will also talk about the Siblings in their work. Their focus was on welcome many of you during our Network, our goals and plans for the children and adults affected network morning and am looking the future. by deafblindness and their parents. forward to meeting you in Italy! A group of siblings coming Slowly things start to change and from Osimo (Italy) will be one professionals start to acknoledge Sabine Kersten of our presenters. They will also the role of brothers and sisters [email protected] present a workshop called “Is my within families. Now, six years later

Congenital rubella syndrome – health and wellbeing Sarah Butler and Joff McGill report:

his joint Sense and Sense CRS and how to support them. and professionals, that of health Scotland event, which took Though scientific research into detective. Staff have a crucial role Tplace between 6th-7th March the effects of CRS on adults is still to play observing and recording in the UK, brought together fifty limited, we do know that people what they see, reflecting on this practitioners, as well as scientists, with CRS are more likely to suffer and finding out what health issues families and people with CRS to thyroid conditions and diabetes people may have. It doesn’t stop share our latest knowledge about than other people. We also there though – we need to identify congenital rubella syndrome and suspect that CRS may cause other what we can do to help and find its ongoing impact on individual’s conditions to develop earlier or ways to be taken seriously when health. more often. working with health professionals. Sense has produced a full report There are a number of studies of Supporting healthy living is vital of the information gathered; CRS, often carried out by deafblind – we all need to make friends, keep visit www.sense.org.uk/ organisations. There are difficulties active, eat and drink well, discuss rubellaconference in comparing these studies because our feelings, have a break, do of differences in sample groups things we are good at and have a An overview (type and size), different people sense of purpose. As professionals In much of Europe and the responding to the study, and and support staff we need to find Americas rubella is now almost different timescales (when the ways to support well-being. absent because of comprehensive study happened, the age of those The seminar chose to focus on immunisation programmes, studied and the year in which they the following: though elsewhere rubella is still a caught rubella). None the less, they l Endocrine problems: thyroid significant problem. Even where give us useful indicators as to the conditions and diabetes new cases of CRS are rare, adults health indicators we need to look l Vision for in our work. continue to live with CRS: so we l Hearing More importantly they point need to understand the on going l Circulatory issues to a clear role for support staff health concerns of individuals with l The Brain and behaviour

Ja n u a r y – Ju n e 2009 • DbI Review • 39 Network News

Endocrinal problems diabetic retinopathy. someone hears, and how different The way that hormones work in It is therefore crucial that situations affect this. our bodies is extremely complex everyone with CRS has regular eye and not yet fully understood. We checks. For some people these eye Heart conditions do know, however, that people checks can be difficult but they are The most common heart problems with CRS are more likely to develop worthwhile for everyone. The key in people with CRS are patent certain hormone-related problems, to successful eye checks is to build ductus arteriosus (PDA) and in particular thyroid problems and good relations with the eye clinic pulmonary artery stenosis. In PDA diabetes. and to prepare well. the child has a hole in the heart The thyroid may become It is also important to be aware that has to be closed by surgery or over stimulated, which causes of the signs of deteriorating some type of plug: very rarely an the body’s systems to run at vision such as a person becoming adult needs treatment for PDA if high speed. Or, if the thyroid is clumsier, or finding it hard to it was not dealt with in childhood. underactive the body’s systems judge the height of steps and Pulmonary artery stenosis describes slow down. Both conditions can be curbs. Staff need to watch out a narrowing of an artery which treated with medication. for these symptoms and to seek causes reduced blood flow to the Diabetes is extremely common, help urgently as they can indicate lungs and puts a strain on the and is caused by a lack of insulin. a serious problem that needs heart. The artery can be widened This means that the body cannot immediate treatment. by inflating a balloon via a absorb glucose, and so cannot catheter. derive energy from food. Though a Hearing When a deafblind person receives small proportion of diabetics need Ear problems are the most treatment in hospital they will to inject insulin, most can control common effect of CRS and are need support: preparation (such as the problem by managing their present from birth. Because both familiarising them with the room diet, exercise and lifestyle. the inner and middle ear may be where they will be staying) will damaged this may cause problems make this much easier. Vision not only with hearing but also with A defining feature of CRS is the balance and movement. As people CRS, the brain and eye problems that people are born get older they may also experience behaviour age-related hearing loss and loss with. Many babies are born with Rubella affects the developing caused by damage to the ears by cataracts – which nowadays are brain, which may in turn affect loud or persistent noise. operated on, and replacement a person’s relationship with the The most common ear problems lenses inserted. Some may be born world and their behaviour. The experienced by people with CRS with small eyes and most have rubella virus can disrupt the are tinnitus, recruitment (where some vision problems. development of the neural paths in certain frequencies are very loud), As people with CRS grow older the sensory, motor and cognitive loss of balance, auditory processing it seems that they are more prone and integrative systems. Early disorder, and problems with to other eye conditions than the damage may not have observable integrating the senses. general population. The most effects straight away – we may It is often hard to tell the effects common conditions are cataracts, only see the effects when the of damage to the ear as clinical glaucoma and retinal detachment. affected part of the brain is called tests are at best a rough guide. We In addition, because more people into action as the person develops. therefore also carry out extensive with CRS develop diabetes, they While we can use standard functional tests to see how are also more likely to develop checklists to assess a person with CRS’s behaviour, looking for possible neural impairment, we It’s not new interventions that change must always bear in mind the “ powerful effect of deafblindness behaviour – it’s staff’s increased knowledge itself. So while a person’s changing behaviour may be due and understanding ” to impairments in the brain, it Conversation overheard between delegates may also be due to the way that deafblindness affects their ability to

40 • DbI Review • Ja n u a r y – Ju n e 2009 Network News communicate and understanding Though it can be a long and complex task of the world. “ We all behave in challenging to unravel why someone uses challenging ways from time to time – we all lose our tempers, for example, behaviours, it is worth the effort as by doing this and would hate to be labelled by this behaviour. It’s only an we can build effective support expression of the way we feel, of ” communicating our feelings or As delegates from all over the needs. People with CRS are no world reflected on the seminar, different – the only difference three themes emerged: is that we label some of their l the importance of understanding behaviour as challenging because the initial and ongoing medical it carries risk and because we can effects of CRS and their find it hard to cope with. implications on individual’s There are many possible causes health of challenging behaviour – a l the importance of particular incident will be caused communication between by many factors. Though it can be professionals and the person a long and complex task to unravel with CRS why someone uses challenging behaviours, it is worth the effort as l the importance of collaboration by doing this we can build effective between professionals. support. Supporting communication All too often our work in this and providing meaningful area focuses on congenitally experiences that form the basis deafblind people, but if we are of conversations and shared truly to understand the on-going memories is vital in this. health issues that people with CRS face we need to listen to and learn Summary from individuals with CRS who have fewer disabilities, but as many The incidence of CRS is low enough health worries. that many non-specialist health More than anything we have professionals know little about it. to remember the role we play in This can be enormously frustrating supporting the health and well- for people with CRS and their being of those we work with. families. So we have a duty to learn Being a reflective health detective more, to support better and to is as good a start point as any. listen properly.

There are two groups online where you can share and learn more about CRS. Both are moderated by Nancy O’Donnell at the Helen Keller Centre in New York. One group is for people affected by CRS (many were at school together in Boston, USA): it’s busy, and has two key professional contributors, Nancy O’Donnell and Pam Ryan from Perkins school. The other group is for worldwide professionals working with deafblind people. To find out more about joining, email Nancy O’Donnell at [email protected]

Ja n u a r y – Ju n e 2009 • DbI Review • 41 Conference

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42 • DbI Review • Ja n u a r y – Ju n e 2009 SubheadConference here Conference Congenital deafblindness and communication magic o The f dialogue

DbI Communication Network Course

June 22 - 25, 2010 Paris - INS HEA 58/60 Avenue des Landes • 92150, Suresnes

The course will focus on the dialogical dimension of human minds as it is reflected and used in daily communication and education of people who are congenitally deafblind. It will address more specifically the domains of

• Culture • Language • Narrativity • Trust First announcement • Identity

As in previous courses, participants will be able to attend

• Plenary lectures of scientists not related to the field of deafblindness • Plenary lectures of the Communication network members presenting the deafblind perspective. • Video analysis workshops following up the plenaries. • Free papers of the participants.

INS HEA Nordisk Velfærdscenter

Ja n u a r y – Ju n e 2009 • DbI Review • 43 32 • DbI Review • Ju ly - December 2009 Shazia

Shazia has dreams; do you know what they are?

Dipti Karnad from the Clarke Literacy for students Who tactile representations of real life School in Chennai discusses Are Deafblind experiences that are permanent developing language and for the child to access .This child A broader definition of literacy is literacy skills in children with may not have symbolic language needed due to the fact that: deafblindness and introduces us skills to participate in literacy l Not all students will be to a rather special student… activities These experiences would traditional readers and writers, Children who are born with provide her or him with literacy but they will have literacy! deafblindness do not have casual experiences. l Communication is often the access to language and, as a primary need of students with result, whatever language and Meet Shazia deafblindness. communicative environment This paper follows the l A variety of communication surrounds the child must be development of language and brought to him or her. Our modes are used by students with deafblindness. literacy of Shazia Fathima, a pretty aim is to give such children an young girl with deafblindness. She opportunity to learn language has low vision and has a profound and develop literacy skills without Facets of Literacy hearing loss. Her intervention which she or he will be withdrawn The three facets of literacy are started at age three plus as the first from people and the environment l Emergent Literacy two and half years of her life were or live a life of frustration and l Academic Literacy spent in and out of hospital due to deprivation from social interaction. l Functional Literacy eye and heart surgeries. She joined the Sadhana Unit in What is literacy? Emergent Literacy late 1999. Initially she did not like l In ordinary terms, literacy Emergent literacy is the process to wear her glasses and hearing generally refers to the ability to of developing literacy that begins aids. She loved to spin, run around read and write. at birth and ends when children and gaze at lights. She was begin to engage in conventional intelligent but what she lacked A Broader Definition of or functional reading and writing was a means to communicate. Her Literacy (Sulzby & Teale, 1991) eyes, facial expressions and body language made it evident that she l Literacy is communication Academic Literacy needed a way to express herself. especially when the concepts and The basic reading and writing skills Hence, communication was made issues are applied to students taught in a conventional literacy a priority and work was started on with deafblindness. In this medium during elementary and object based communication, sign respect, then, literacy is the most middle school years” is known language, finger spelling, exposure basic foundation for all learning, as academic literacy. (Koenig & to reading materials, picture books for receiving and imparting Holbrook, p. 265, 2000) and the like. information, and for initiating Everyone bombarded her interactions with others. Functional Literacy with language which was age l What is more important for “The application of literacy skills appropriate. However, in doing so students with deafblindness is and the use of a variety of literacy we kept in mind that we followed that literacy opens the doors to tools to accomplish daily tasks in a logical order in presenting the personal relationships, shared the home, school, community and different modes of communication. interests, leisure activities, work setting” – This is functional Soon, her “so called behaviours” learning strategies, partial to full literacy. (Koenig, 1992). reduced and she began to accept independence at home and in In the case of a child who is her glasses and hearing aids. the community, and vocational deafblind emergent literacy would possibilities” (Langley, 2000, p. 1) mean “reading” and “creating”

44 • DbI Review • Ja n u a r y – Ju n e 2009 Shazia

Willing learners

How we introduced would be labelled in large print. In When it was time to go language and literacy to the evening after school, teacher shopping. Shazia needed to make a Shazia would hand over the story box to shopping list to buying ingredients Shazia’s mother so that she could to make jam sandwiches in class. As a young child she enjoyed use the materials to refresh her Teacher and she would discuss outdoor activities. Her favourite memory. what materials were needed. outdoor activity was to go to Building on real experiences Teacher would show her a slice Nageshwara Rao Park with her that children enjoy as a of bread and the bread wrapper, class. The activity would mean beginning point for literacy a small empty jam bottle and an carrying her snack bag, wearing experiences by referring to empty butter packet. Together her cap and taking a ride in the tactile items associated with they would make a shopping list bus. Once at the park, she would these experiences. Soon these which was very tactile and visual. go to her favourite slide, eat snack tactile items were organized in a Teacher would staple the empty under the tree and drink APPY “story or memory” book so that bread wrapper on to a card and from the tetra pack. Of course, the child could refer to events write “BREAD” in large print on it. before getting back to school she and “reread” these stories. On another card she would tie the would gather seeds from under the For Shazia, objects were empty jam bottle and write “JAM” huge jamun tree. replaced by photographs, then line and on a third card, she would Back in school, her teacher drawings before she moved on to write “BUTTER” after stapling the would prepare a story or memory children’s storybooks. empty butter packet on it. Shazia box and recreate the outing to By exposing the child to braille would go to her calendar box, the park tactilely using items and large print in a similar find the shopping symbol and get from the trip e.g., the bus ticket, manner that young sighted ready to go shopping. At the shop, the straw for the drink that she children are exposed to print, she would match the objects that had, the empty snack packet and e.g., on labels, the child learns her teacher had prepared as a of course the jamun seeds. She to assign meaning to Braille shopping list and make the correct would then discuss the event dots and letters although at first purchase, of course with teacher’s while encouraging Shazia to she may not be able to read the assistance. manipulate each object in the abstract symbol system. After a lot of practice and a “story or memory” box. Each item substantial growth in vocabulary,

Ja n u a r y – Ju n e 2009 • DbI Review • 45 Shazia

Shazia is now able to make her own shopping list and buy materials in the supermarket. Her mother also encourages her to help her make the shopping list for the household groceries. “My first lesson in literacy was when I recognized the letter ‘F‘ on a hoarding. This made my teacher very happy. Soon I learnt that everything had a name and I even made up my own name sign, an ‘f’, as in Fathima, fluttering like a butterfly in the air. I learnt the sign names of others in the unit and also made up name signs for new children and now trainees,too. My sign vocabulary began to grow. I became less naughty. Everyone wondered if it was the same ‘me‘,” reminisces Shazia. Shazia began to “read” a n Saturday – No school Use of Conversations schedule that consisted of objects n Sunday – No school. Conversation is what we need arranged in the order of the events We showed the signs for each to improve the communication they represented. But we realized day and encouraged her to use or language skills of a child with that Shazia was quick in picking up cards to complete the sentences deafblindness. It can be defined as new concepts so we moved from a dialogue between two partners the calendar boxes to portable Today is ______. consisting of multiple turns that picture schedule with photographs are balanced between partners and words written below them. The sentence was also signed around topics of shared interest. She moved very quickly to line alongside. A teacher made Most of the times we think of drawings and then by the end calendar was used so that she using words to fill our turns in a of 2000, she showed a clear could put the dates. In this way conversation, but we can also use preference for the written word. Shazia learnt the meaning of actions, objects, facial expressions, Likewise, she was able to point to a “yesterday” and “tomorrow” along and movements as our response picture from a menu of pictures in with the verb changes that came during a conversation. The shrug order to express a desire or make a automatically. of our shoulders, waving our comment. Teaching the months of the year arms in response to a question As we all know, for a child with was more of a challenge since a or handing an object to someone deafblindness the concept of time new month comes only after thirty are nonverbal strategies that passing is very difficult and that or thirty one days and sometimes every hearing and sighted person the days of the week and months after twenty eight days. But we uses. Conversation differs from of the year cannot be learnt by used birthdays and important other types of communicative rote. For Shazia, we used the holidays for teaching this. And hey interactions because the schedule or calendar system as Presto! Shazia suddenly became focus is on interaction around the basis. We used one favourite hungry to know the birthdays a shared topic, rather than activity per day to teach the days of each child and staff of the communicating concrete needs of the week e.g. Unit not to forget her family or wants, instructing or following n Monday – Shopping members. She is now conversant instructions. n Tuesday – Cooking with everyone’s birthdays and is n Wednesday – Outdoor Play ready to wish them in advance. n Thursday – Art and craft All this was possible through n Friday – Trip conversations galore.

46 • DbI Review • Ja n u a r y – Ju n e 2009 Shazia

How conversation has l Earlier it appeared that as a Simple repetitive structure. helped Shazia young child Shazia had no topic Playful atmosphere. that interested her. However, we l We noticed that she had much to Clearly marked cues for child found that the weather was of tell us and all around her made response. great interest to her especially the best attempt to understand Multiple opportunities for child when the Sun played peek-a- what she wanted to say. We response. boo amidst the clouds. Tuning supported in all her efforts to Reversible roles. into her interest helped us to converse and soon we took the Peer Interaction have successful interactions at help of objects, pictures and that moment and also enabled Peer tutoring short sentences to support her us to catch her attention at Opportunity to us different kinds gestures and body language future moments when we had of language forms like questions, which formed a base for literacy. something significant to teach or statements, comments etc. Towards this end we began to present. This morning circle time soon introduce simple news items that paved the way for language work began by writing the date, day As Shazia acquired more and and we started writing what each and month everyday. By doing more language, she began to person had said using speech this she learnt that dates change find topics of conversation from balloons in an attempt to make the everyday but the month remains incidents at home, television, conversation a visualized one. the same for sometime and the newspapers, and magazines. year takes longer to change. We One day about five years back Shazia: Oh! I have a headache! also introduced weather in the she surprised us by saying her how Arihant: (touching her forehead) news along with pictures and fair and pretty she would look Fever? encouraged her to take turns to in October since she had started Dipti: Poor girl! You must go to change the date and mark the using “Fair and Lovely Fairness” bed now. weather on the teacher made cream since September 1st. It was calendar. The mutual respect for clear that she was talking about As days went by conversations each other during conversation an advertisement she had seen on grew longer and moved from led Shazia to repose faith in all television. diverse subjects to more the persons in the Unit as well as Soon she began to read print and common ones and then there people at home. as we provided appropriate access was an opportunity to put the l Conversation helped her to get to these materials, there was no conversation in text form so that emotional comfort. Even as a looking back. Simultaneously she more of language work could be little girl she realized that she also began to want to write. As carried out like filling in the blanks, had some one who would listen her mother reported, “It is not safe checking the correct answers, to her. She was able to make her to leave paper and pencil in the answering questions and finally ideas known through her art. She vicinity of my child as she wants sequencing. used a lot of drawing to express to write all the time.” We provided l Providing material and herself. She began of narrating this access or she would never have appropriate access to language stories based on her drawings. any access to them. is the most crucial aspect of One of them was her experience giving a deafblind child access at the swimming pool where she l Taking turns is a necessary to the environment. Once pushed her younger sister into skill. Pausing often within a conversational interactions are the water. Shazia also has a great conversational interaction to developed, language can become deal of imagination and expressed allow him to take a turn will a part of those interactions. If it through her drawings- her help make a deafblind child’s access to language is provided picture of a person lying on the linguistic environment more in appropriate modes, during floor and a lot of stick figures natural and draw her into it as conversation, learning will standing around with bent an involved partner. Towards take place naturally and will be heads. This she interpreted as the this end, we made use of the pleasurable to both child and funeral of her granduncle who morning circle time. This activity teacher or parent. We acted as had died. Another example of had features that are good for eyes and ears for Shazia in order her imaginative capacity was her teaching children to take turns in to interpret the language and picture of the Sun smiling after conversations. actions in the environment. the rain.

Ja n u a r y – Ju n e 2009 • DbI Review • 47 Shazia

Without a conversational l Entertainment through for Mathematics, Science and foundation, if at all signs and literacy keeps her occupied Social Science. Science is her symbols are learned; they will be in her free time. She enjoys favourite subject and she is done in isolation and will have the reading children’s books with particularly interested in lessons quality of trained responses lacking illustrations. Her favourite is related to plants, animals and the flow of a genuine language reading rebus stories. She is able planets. In fact, she loves going and true communication. to operate the CD player and the to the planetarium where she Since conversation and computer. She enjoys using the finds something new every time. interaction were priorities, Shazia “Paint” option on the computer. had many opportunities to learn, l She can solve problems. She Shazia has dreams; do you enjoys putting together jigsaw new words, signs, symbols, and know what they are? functional living skills. Better puzzles, solving word puzzles conversational skills lead to better and crosswords when clues are “I want to be an air hostess” she overall communication skills that given, putting jumbled stories in said one day. are critical to leading a quality life order, and unscrambling jumbled But that dream was very short- for individuals with deafblindness. words. She also likes solving lived. mathematical problems that “What if I become a teacher like Results : involve use of language. you?“ she said to the teacher. l She is able to acquire and l Shazia is using her ability to transmit knowledge or read and write to organize and information. She knows the Or “Why not an artist?“ She support memory. She has learnt correct time for her favourite wondered. to write her diary. She can use television programs and can words like “because”,”so”, “but” set the reminder for them. She “Oh, yes, why not?“ she thought, etc with ease. She writes all the is able to select her favourite as she looked out of the window incidents that have taken place program on TATA SKY and is at the sun going behind the dark at home; of course she takes the very good at doing the activities clouds one afternoon. help of her mother and sister on the ACTIVE KIDS channel. when she is at a loss for words. She loves to listen to and watch “Hey look… teacher”, she cried. l She can create and maintain people talk. The teachers in the “Look at those grey clouds, it’s relationships and deal with Unit always tell her what is going going to rain soon“, she said. emotions through language on. If any of us is talking over and literacy. She is able to write the telephone, she is curious to Hardly had she completed her simple notes e.g. the other day, know who is on the other side sentence, there was a heavy when I was displeased with her and wants the conversation to downpour. and ignored her for the whole be interpreted. She loves to share day, she slipped a note in my her secrets with her teacher and “You can be meteorologist, palm which read, “Dipti is angry. whispers in her ears. Though can’t you!” I said. I am sorry, tomorrow, I am good for others it may be mumbo “The first deafblind girl”. Though the sentence was jumbo, for me, Shazia’s teacher, meteorologist“, I added, taking not grammatically correct, Shazia it is sweet music. She knows the her small hand into mine. had the idea that she can make mobile numbers of her teachers herself understood by writing. and her relatives and is now Her tight clutch gave me the l She can understand and learning how to send sms on the confidence that her dreams would convey instructions through mobile. be fulfilled – Air hostess, Teacher, the use of appropriate Artist or Meteorologist – “I want l She can identify things or language. Shazia is able to you to help my dreams to be places. She is able to locate the follow picture recipes and make fulfilled, Teacher,” she said with appropriate shelves and aisles omelet, sandwich toast, potato stars in her eyes. in a Supermarket to make her salad, carrot halwa and vermicelli “Of course, dear,” I reassured her purchases, where to buy tickets kheer. She can follow instruction as I knew that she had developed on the suburban railway station to do art and craft activities. language to a very great extent, and the ladies room in a public but there was much more for her place. She is integrated in Std IV to achieve. of our Hearing Impaired School

48 • DbI Review • Ja n u a r y – Ju n e 2009 Deafblind holiday

The 12th European Deafblind Week European Rehabilitation and Cultural Week of The Deafblind 2010 in Tübingen, Germany (formerly known as the European Deafblind Holidays) Monday 2nd to Sunday 8th August 2010 Hosted by “the Association of the Deafblind in Baden-Württemberg (Germany)” and the “diocese of Rottenburg-Stuttgart – pastoral care for deafblind people”

Dear Friends, We are able to confirm that the 12th European Deafblind Holiday will be arranged in Germany! Welcome! This is a warm invitation to all deafblind people who live in Europe, to participate at the 12th European Rehabilitation and Cultural week of the Deafblind. This week will be arranged in Tübingen, near Stuttgart in the south of Germany. Where? “Tübingen is an enticing and dynamic Swabian city of culture! It’s 5 miles southwest of Stuttgart Airport / Trade Fair, with about 90,000 inhabitants and 23,000 students. Since its founding in 1477, the university has shaped the character, formed the appearance and brought life to the Universitaetsstadt Tübingen. The university hospitals not only employ many people but also attract patients and visitors from far and near.” www.tuepps.de/tuebingen-english.htm Participation The participation fee amounts to 450 Euros per person. It includes accommodation, full board and activities.

It is possible to apply for financial support to participate at the European Deafblind Holiday. The maximum amount of money individual participations can apply for is 100 Euro.

More information concerning the programme for this week, registration, accommodation and transport will be given in October 2009

Please contact Katholische Seelsorge für Menschen mit Hörsehbehinderung/Taubblindheit Diakon Peter Hepp Im St. Michael 39, 78628 Rottweil, Germany Tel.:0049-741-2902642, Fax: 0049-741-2902641, email: [email protected]

Ja n u a r y – Ju n e 2009 • DbI Review • 49 Integration programme in Ghana

Ghana commits to supporting deafblind children in inclusive education…

Nina Akuorkor tells us more about getting this programme off the ground…

Background 20 years old. Information them to have training at Over the years the education from her parents said that Perkins School for the Blind. of persons with disability she was 8 years when she In 2006, when the leader had been in a segregated became seriously sick and of the team, Martha Majors residential school. This group was admitted to one of the knowing the academic of children and young people country’s hospitals for some potential in these students, have places in residential months. Upon recovery had a discussion with the special schools to pursue she became deafblind headmistress of the entire education and training. In but has some speech. She school, head of the centre this 21st century the new communicates using speech, for deafblind children/youth, trend in the education and sign language as well as as well as the teachers of training of persons with Braille. She came to the the two students, about an disability is an integrated/ centre in 2001 at the age of integration programme. inclusive place alongside their 13 years. Fortunately, the headmaster “able” peers. Asante Boateng was born at time, Mr.Ashiable from In view of this new trend on 11th July 1990. He is a the School for the Blind an integration programme congenitally deafblind boy. (Akropong) agreed that for two deafblind students He came to the centre in these two students could be is continuing at the School 1995 when he was 5 years. integrated in his school and for the Blind, Akropong when the new headmaster, Akuapem in Ghana, and How the programme Mr. Annor, arrived he you have read about this started appointed a coordinator in the person of Mr. Tetteh before in a previous issue. The integration programme from his school to see to the The integration programme for Sylvia and Asante came successful running of the involves Sylvia Peprah and about through the initiative programme. Asante Boateng who are of the team from Perkins both totally deaf blind. School for the Blind. Since 2003, they have come to About the young Sylvia and Asante Ghana to train staff at the people Sylvia was born on the 28th centre, and three teachers In January 2007 Sylvia started September, 1988 so she is have been sponsored by in Primary 6 and she is now

50 • DbI Review • Ja n u a r y – Ju n e 2009 Integration programme in Ghana

in Junior High 2. She takes The challenges of the some of the students who are subjects like Mathematics, programme deafblind but have residual English, Social Studies and vision. The deafblind children Travel some Science. In addition to taking this programme are The students have to travel these she attends the library, Sharon Afrakumah, Martha, to the school every Monday takes physical education Joe and Michael. and Wednesday by private and socializes with her class The idea for this on-campus transport if the taxi fails peers. Sylvia’s teacher is Kafui is to enhance students social to pick them up. This is a Kom. skills through interaction problem as paying on the Asante Boateng started and increase their functional spot for such a service is in Primary 2 and now in academic work along side high. Primary 4. He takes subjects their peers in the deaf like English, Mathematics programme. Speed of learning and Environmental Studies. Finally I would like to thank Due to their disability, the He joins his classmates in our friends from Perkins for children are a bit slow in physical education, and their tremendous support, receiving and learning, hence going to the library. His the Headteacher and teachers there is a delay in completing teacher is Trudy Segbefia. for the School for the the syllabus. Blind for their professional commitment. The achievements from Campus Integration. the programme There is also a programme Contact: mamaakuorkor@ l their social interaction is of on-campus integration for yahoo.com increasing all the time l their peers, who are blind, are learning sign language so that they can communicate with them effectively l some teachers at the school are learning signing as well l most teachers and students are beginning to realize the potential of the deafblind students. l in respect of Sylvia, she has improved in writing and reading Braille, as well as the efficient use of her residual speech

Ja n u a r y – Ju n e 2009 • DbI Review • 51 Documentary film

Voelen means “feel” – an evocative film from a young Dutch film maker…

tephane Kaas is studying film at the craftswoman. film academy in Amsterdam. He has It’s a wonderful collaboration between the Smade a moving and evocative short film maker and the subject – have a look! documentary starring a young deafblind woman. In the film Leonie, a calm and clever View it on the internet at this address: young woman describes and discusses her http://vimeo. life and her special interest – cows! com/2132575?pg=embed&sec= We watch Leonie as she takes her life or on Stephane’s website: http://www. day by day – she is a creative young stephanekaas.com/films/voelen.htm Leonie

52 • DbI Review • Ja n u a r y – Ju n e 2009 Dayadan orphanage

Children at the Deafblind Unit at the Dayadan Orphanage, Kolkata

Rodney Clark writes about a recent visit he made to India with Ann Barnett, former CEO of Deafblind UK. He met his old friend and DbI stalwart Beroz Vacha and made a number of visits, including one to the deafblind unit in one of Mother Theresa’s orphanages.

his unit was an extended family are not All the children that live here established in accepted. The sisters care “ “T2006 with a grant well for the children but are street orphans, normally from Sense International needed some convincing that India with funds provided those who now attend the brought by police or locals by the Tata Trust. The grant unit could possibly benefit ” continues until 2011. This from education. Having project is managed by Dr seen the progress that they of the deafblind workers at Ruma Chatterjee, a history have made in a very short the Braille Press at the Helen lecturer at Kolkata University, time they are more than Keller Institute in Mumbai. At in her capacity as a volunteer convinced and are committed present, resources only allow with the Kolkata Society for to ensuring the children’s the school to operate on 3 the Visually Handicapped, continued education. days a week, but it is hoped SII’s partner. The unit is housed to extend this soon, also The orphanage is one in somewhat cramped to include some evenings. of the 20 or so run by the accommodation within the Outside these three days, Missionaries of Charity, the orphanage and it is hoped the children receive little in order of nuns led until her that more space will become the way of education, and death in 1997 by Mother available soon. There are 11 the next step is to involve Theresa. All the children that children who are taught by the sisters and the many live here are street orphans, 6 trained teachers and one overseas volunteers in their normally brought by police assistant, who is, in fact, the programmes, although or locals. Orphans who have sister of Pradeep Sinha, one this will take some delicate negotiation. Another difficulty is that when the children reach a certain age, they must transfer to another institution where it will be almost impossible to continue their programmes. As can be seen from the picture, the children work with their teacher on a 2 to 1 basis at specially built small tables, with one educator able to work one to one with a child when a full complement of staff is present.”

Each teacher works with two children

Ja n u a r y – Ju n e 2009 • DbI Review • 53 SubheadInclusion herein India

Inclusion on the horizon for deafblind children in India

Akhil Paul reports significant policy developments in India…

ense International India’s role as an advocate for the Srights of deafblind people got a boost with the support from this project as we have reached a strategic alignment with the Government of India in their flagship Elementary Education programme- Sarva Shiksha Abhiyaan (SSA), Our consultations have resulted in inclusion of deafblind children in its mandate. State level resource teachers of SSA and Integrated Education Department, faculty members, the Rehabilitation Council of persons themselves discussed the Area Convenors and Programme India. Sense International (India) challenges in inclusion and shared Officers of SSA and District joined hands with the National experiences to bring deafblind Institute of Education and Training Institute for Empowerment of persons in the mainstream. (DIET) etc. across the country are Persons with Multiple Disabilities The participants stressed upon trained on deafblindness. This will (NIEPMD), Ministry of Social Justice designing strategies for developing ensure a cadre of trained teachers and Empowerment, Govt. of best practices and systematic at the community and institutional India. Mrs. Anne Marchal, Head follow-up for the inclusion of settings for supporting education of Development Cooperation, deafblindness in the disability of deafblind children. The inclusion Delegation of the European policy and legislation of the of deafblindness in State Disability Commission to India, Bhutan country. Some of the key issues Policy of Chhattisgarh and and Nepal, inaugurated the that emerged during the three day Bihar state has been facilitated. conference and was joined by Dr. conference included: the need for Meghalaya, Himachal Pradesh Shantikarn, Regional Director- a proper system of certification of and Kerala are now being perused DPR, WHO–SEARO and Maj. Gen. Deafblindness/MSI; better access on similar lines. With the support (Retd) Ian Cardozo, Chairperson, to Information Communication of European commission, Sense Rehabilitation Council of India. Technology, Rural development International (India) along The Keynote address was given programs and increased with four RLCs, have facilitated by Mr. Rodney Clarke OBE and collaboration between NGO’s to constructive dialogue between the conference focused on the avoid duplication. Overall, the deafblind persons, their families, theme “from Isolation to Inclusion” conference served the purpose of educators and the local authorities for people with deafblindness. cumulative introspection on the for a greater mutual understanding The highlights of the conference progress made till date and also and solutions. were book releases, distinguished helped define the path ahead. As a step forward in the same service awards, and constructive Over the past few years a solid direction the first ever National discussions. foundation has been laid for the Conference on Deafblindness About 265 participants, including inclusion of deafblind persons in was held in New Delhi in January development practitioners, policy the society as equal partners and 2009, which was Sponsored makers, researchers, family we are hopeful that there will be a by the European Commission members, educators, experts life of dignity and opportunity for and supported by Hilton/Perkins from related fields and deafblind deafblind children. International Program (USA) and

54 • DbI Review • Ja n u a r y – Ju n e 2009 Mental Health and DeafblindnessSubhead here

Mental Health Special Interest Group

Supported by the European Society for Mental Health and Deafness and the Roberto Wirth Fund

The Roberto Wirth Fund - Carry out research and produce The Roberto Wirth Fund is a non- educational materials and profit association that is dedicated information resources. to supporting deaf and deafblind children, and their families. European Society for The association focuses in Mental Health and Deafness particular on children from birth ESMHD is an international Non- to six years and works with Government Organisation for the programmes that promote an promotion of the positive mental adequate cognitive, affective/ health of deaf people in Europe. emotional, social, linguistic and Mental health includes healthy communicative development that emotional, psychological and allows children to fully express their social development, the prevention personality. and treatment of mental illness and other disorders. ESMHD Why we work with deaf focuses on people, who were and deafblind children born deaf or deafness occurred Many deaf and deafblind children in early childhood and whose in Italy do not receive adequate first or preferred language is sign support during their development. language. Unfortunately, services, The ESMHD is interested in the programmes and professionals do mental health of all deaf people, not fully respond to their particular whatever the age of onset or needs from birth to diagnosis, degree of deafness. and during rehabilitation or habilitation until they attend ESMHD Background deaf people have been established school. Such deficiencies can ESMHD was established by a and existing ones expanded and affect the process of development group of concerned people from developed. and may prevent children from four European countries in 1986. In spite of progress, the majority attaining the best quality of life. ESMHD now has representatives of deaf Europeans do not have Families are often unprepared from most European Union equal access to mental health when they have a deaf or deafblind Countries and some from wider services at all levels. In too many child, and can be disoriented in Europe. countries there is still limited, or choosing the best response to their Links exist with the European no specialist professional expertise child’s needs. Union of the Deaf, European in the mental health needs of deaf Regional Council of the World people. Our activities Federation for Mental Health, There are significant mental - Give support to families. World Federation of the Deaf health implications for all that suffer from discrimination and - Develop programmes. Commission on Mental Health, and the European Regional Office of restricted opportunities. - Create projects in the field of the World Health Organisation. Deaf people have a significant education, art and sport. additional challenge, as their - Provide study scholarships. ESMHD Issues language is different from that - Organise seminars, workshops of their family and most others in Since the formation of ESMHD and conferences on deaf and their country of origin. deafblind themes. new mental health services for

Ja n u a r y – Ju n e 2009 • DbI Review • 55 SubheadMental Health here and Deafblindness

ESMHD Activities l Research into mental health and One hundred professionals deafness; ESMHD convenes an International come from 25 different countries l Opportunities for deaf people Congress every three years and working in the field of deafness to provide the mental health more frequent smaller thematic and mental health discussed services for other deaf people; seminars, workshops and research, developments and l Networks of interested people in exchanges on current topics. services. It provided an opportunity each country; ESMHD promotes networking for professionals to meet and and the exchanges of personnel l Information collection and share knowledge and experience and expertise between countries. dissemination; with each other. This was achieved l Respect for deaf people’s through special interest groups, ESMHD Aims language and culture; where people could present case l Exchange of ideas. histories, present research findings l Mental health practice and share information about appropriate to deaf people’s practices and interventions. ESMHD and Roberto Wirth needs; Attendees developed new areas l Access to specialised mental Fund Special Interest Group that need to be researched in the health services for deaf people 15 – 19 April 2009 Rome future to better services for deaf with mental health problems; This year’s SIG meeting was co- people and their families. l Specialised habilitation and/or hosted with the Roberto Wirth rehabilitation or maintenance of Fund in Rome. life skills;

Information – taking on the recommendations of the strategic plan

Providing good opportunities to communicate easily with each other and a top class information function is the key to achieving our strategic aims. So, a small group of information specialist staff from our member organisations met to consider how we can begin to take this forward. In the meeting we discussed the issues: improving our website, “e” communication for networking and accessibility for non-English language speakers. An excellent, informed discussion led us to recommend that we develop our website significantly, so it has the potential to provide a “first choice” address for information about deafblindness, as well being able to act as an effective membership hub for our DbI activities, including the Secretariat and Networks. The group’s suggestions for an improved website will provide the framework for a specification for a new site. Information Advisory Group, left to right: Graeme Thomson, It will be an exciting time for the Information Ole Mortensen, Lasse Winther Wehner and Stephen McCarthy Officer and team to support this initiative and to make sure our systems can support our other activities too!

56 • DbI Review • Ja n u a r y – Ju n e 2009 Strategic plan

How to make strategic planning fun and win chocolates or whisky! The offer comes from… Gill Morbey

am the DbI co-ordinator for there is. Ton Visser has been the strategic plan and I know working on our constitution as Ithat having read those first few part of the registration of DbI and words most of you have moved for the audited accounts, work is on to the many more interesting ongoing on UN recognition and topics in this review. In which case membership is being encouraged you are unlikely to win the whisky, by some simple marketing tools only by reading this short piece will like the membership cards and pins you find the answers. Bernadette has organised and the So please read on and support secretariat has done a lot of work those people in DbI that despite in sorting out the data base. Eileen their busy schedules continue to and her group have also been give time to important aspects of meeting on information and there our organisation. I think it’s fine is a separate report on progress fine if our thoughts change. We not to know all the details of our here. will build in reviews and room ‘to strategic plan but we should be The current 3 strategic groups make mistakes’ as it’s ok not to get engaged with the general direction are all working towards reporting everything right first time. of travel. I know many of you are back to the Council in Senigallia working on various aspects of the in September. The Membership Gill Morbey strategy and I know how much you group is keen to find creative ways value contributions from the wider of engaging with people and to If you would like more information membership. It’s really helpful, ensure there is a growing sense of or wish to contribute on any aspect everyone has something to say. ‘ownership’ of DbI. of the strategic plan contact. The new Strategic plan, agreed The Network group are [email protected] in Perth in 2007, developed considering a number of areas [email protected] recommendations in 7 areas: and amongst these is the wish l Members to support creative people while Now win a box of l Networks at the same time recognising chocolates or a bottle l Information that if things are done under the DbI ‘banner’ we can probably of whisky: l Staff Development agree that some standards are l Advocacy reasonable. Questions l Organisation The Advocacy group asked l Finances for assistance in gathering How many key areas does the information about the situation strategic plan identify? The Council then prioritised of the “Advocacy of people with these areas and the focus of the deafblindness”, and sent out a Who is the lead person for three strategic planning groups is questionnaire to be returned in the advocacy group? currently Advocacy led by Ricard May. Lopez, Networks led by Ges It will be great to get all this Who has organised Roulstone and Membership led by information pulled together in membership cards and pins? Eberhard Fuchs. September and no doubt there will This is not to say that there isn’t be more debate. One thing we are The winner will be important strategic work going all agreed on is our wish to make announced in September. on outside these areas because the plan a ‘living’ document so it’s

Ja n u a r y – Ju n e 2009 • DbI Review • 57 SubheadSecretariat here

he Secretariat in Australia has the new DbI Constitution. The enjoyed the transition period General Assembly will take place in Tof taking over responsibility Senigallia, Italy during the week of for the DbI Secretariat and we now the 7th European Conference, 22 – feel well at home in this role. We 27 September 2009. An exact date, greatly appreciate the support of time and venue will be announced ManCom, Council and Members in the coming months, however and look forward to continuing with this announcement we wished this positive relationship and Elvira Edwards and Bronte Pyett to provide members with ample making real progress for DbI. notice to make arrangements for communities and networks we their attendance if they wish to be support. DbI 7th European a part of this event. If you haven’t already renewed or Conference 2009 would like an update on the status Member News With the DbI 7th European of your membership please contact Conference 2009 approaching the Secretariat on secretariat@ The Secretariat is always very we have enjoyed supporting the deafblindinternational.org. pleased to learn about the work conference hosts by sending and events our members are regular email announcements DbI Management involved with and we encourage you to keep in contact and tell us to members far and wide to Committee encourage participation in what is your news. Where appropriate we sure to be a wonderful event. In February this year the DbI are happy to help spread the word ManCom met in Osimo, Italy. We for you via the DbI website. It’s would like to take this opportunity DbI Membership wonderful to have up to date news to sincerely thank Lega del Filo posted on the website for everyone, If you renewed your membership d’Oro for being a most gracious the general public and members this year you will have received host. alike, to share in and support. We the DbI Welcome Pack. This year We pass on our sincere can grow and strengthen as an we introduced a Membership gratitude to all the staff at Lega organization if we support each Certificate for Corporate members del Filo d’Oro for their wonderful others ventures and encourage and a Membership Card for hospitality. The generosity of the networking between likeminded Individual members to acknowledge organization was recognised and individuals and organizations. your membership status and greatly valued. We hope to meet you all in provide an easy reference of your Senigallia in September and membership expiry so you can keep Extraordinary General look forward to continued track of it in the future. Also in the correspondence for the remainder welcome pack was a promotion CD Assembly of this year and beyond. containing images and information We recently wrote to members we encourage you to circulate to inform about the forthcoming Best wishes, to friends and colleagues to help Extraordinary General Assembly. Elvira Edwards and Bronte Pyett raise awareness for DbI and the The purpose of this Extraordinary General Assembly is to ratify DbI Secretariat

DbI is a vital network for all involved through either a corporate member There are now three tiers of Corporate in the field of deafblindness. In order or an international network. Non- Membership: to best serve our members, it is crucial voting members will receive a copy Large Corporates: that we raise sufficient funds through of DbI Review and other relevant DbI Annual Fees between d3,000 and fees to finance our basic activities. information. d5,000 With this in mind, there is a Corporate Non-voting membership costs d30 as well as an Individual membership Small Corporates: a year or a discounted d100 for four d form for you to fill in. Please encourage Annual Fees between 300 and years. d as many people as possible to join. 1,500 Voting Members are the Non-Voting Members consist of Mini Corporates representatives of corporate members Annual Fees between d100 and d250 individuals, national networks and who have paid their subscription fees, non-subscribing Corporates. Non- and the representatives of recognised Corporate Members can be nominated voting members can contribute to DbI networks. to sit on the Council. the decision making process of DbI

58 • DbI Review • Ja n u a r y – Ju n e 2009 Membership

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

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

Ja n u a r y – Ju n e 2009 • DbI Review • 59 The World Association Small Corporate Members ARGENTINA Cathy Proll INDIA SINGAPORE Promoting Services Beatriz Angelica Zoppi Canadian Deafblind Bhushan Punani Koh Poh Kwang Cooperative Association and Rubella Association Blind People’s Lighthouse School “Look with the Heart” (Ontario Chapter) Inc. Association Tel: +65-2503 755 for Deafblind People (COOPA) Tel: +1 - 519 - 759 - 0520 Tel: +91-79-630 3346 Fax: +65-2505 348 Tel: +54 - 2302 - 430 690 Fax: +1 - 519 - 759 - 1425 Fax: +91-79-630 0106 Email: kohpohkwang@ Fax: +54 - 2302 - 434 274 Email: cathy. Email: [email protected] ssvh.edu.sg; ssvh@ssvh. Honorary Officers Email: beazoppi@yahoo. [email protected] Website: edu.sg President Secretary Information Stan Munroe com.ar Website: www. www.bpaindia.org Website: www.ssvh.edu.sg William Green Elvira Edwards Officer 2652 Morien Highway Graciela Ferioli cdbraontario.ca U.T. Rao SPAIN Lega del Filo D’Oro Senses Foundation Inc. Eileen Boothroyd Port Morien Hilton/Perkins Program - Joan Brintnell Sense International Dolores Romero Chacon Via Montecerno 1, Osimo PO Box 143 Sense, 101 Pentonville Rd Nova Scotia Latin America The Lions McInnes (India) APASCIDE - Spanish 60027 Burswood WA 6100 London N1 9LG UK B1B 1C6 Tel: +54 351 4234741 House - Group Home for Tel: +91-79-26301282 Association of Parents of ITALY AUSTRALIA Tel: +44 845 127 0060 CANADA Fax: +54 351 4234741 Deafblind Persons Fax: +91-79-2630 1590 Deafblind People Tel: +39 - 71 - 72451 Tel: +61 - 8 - 9473 5400 Fax: +44 845 127 0062 Tel: +1 - 902 - 737 – 1453 Email: hperkins@fibertel. Tel: +1 - 519 - 752 - 6450 Email: Tel: +34-91-733 5208 Fax: +39 - 071 - 717102 Fax: +61 - 8 - 9473 5499 Email: Eileen.Boothroyd@ Fax: +1 - 902 - 737 – 1114 com.ar Fax: +1 - 519 - 752 - 9049 [email protected] Fax: +34-91-733 4017 Email: [email protected] Email: Elvira.Edwards@ sense.org.uk Email: cdbanational@ AUSTRALIA Email: Website: www. Email: apascide@ LionsMcInnesHouse@ senseintindia.org arrakis.es Vice President senses.asn.au Co-opted seaside.ns.ca Celestine Hare rogers.com Website: Bernadette Kappen Treasurer members Able Australia IRELAND www.apascide.org The New York Institute for Ton Visser Strategy Group Leader Tel: +61 - 3 - 9882 7055 DENMARK Finola Loughney Special Education Viataal, Theerestraat 42 Gillian Morbey Fax: +61 - 3 - 9882 9210 Else Marie Jensen The Anne Sullivan Centre Ricard Lopez i Manzano 999 Pelham Pkwy, Bronx, 5271 GD Sint Sense Scotland Email: Celestine.hare@ Center for Deaf Tel: +353 - 1 - 289 8339 Spanish Federation of New York 10469 Michielsgestel 43 Middlesex Street ableaustralia.org.au; Tel: 0045 44 39 12 50 Fax: +353 - 1 - 289 8408 Deafblindness (FESOCE) USA THE NETHERLANDS Kinning Park, Glasgow, [email protected] Fax: 0045 44 39 12 63 Email: Tel: +34 93 331 7366 Tel: +718 519 7000 Tel: +31 73 55 88 280 Scotland G41 1EE UK Website: www. Email: [email protected] annesullivancentre@ Fax: +34 93 331 4220 Fax: +718 231 9314 Email: [email protected] Tel: +44 (0)141 429 0294 ableaustralia.org.au Website: www.cfd.dk eircom.net Email: [email protected]; Email: [email protected] Fax: +44 (0)141 429 0295 John Finch Lars Soebye Website: www. rlopez@sordoceguera. Email: gmorbey@ Australian Deafblind The Centre for annesullivan.ie com sensescotland.org.uk Council (ADBC) the Deafblind ISRAEL Website: www.fescoe.org Tel: +61 - 3 - 9439 2570 (Dovblindecentret) Adina Tal SWEDEN Fax: +61 - 3 - 9882 9210 Tel: +45 - 99 - 31 89 00 Nalaga’at Center Helena Söderlund Email: jfinch2@vtown. Fax: +45- 98 -14 73 44 Tel: +972 3 633 08 08 FSDB Large Corporate Members com.au Email: [email protected] Fax: +972 3 682 37 15 Tel: +46-8-399 000 FRANCE ITALY SWEDEN USA Website: www.internex. Website: www.dbc.rn.dk Email: Fax: +46-8-659 5042 Jean-Marc Cluet Rosanno Bartoli Lena Hammarstedt Jackie Brennan net.au Marianne Disch [email protected] Email: [email protected] French Deafblind Lega del Filo d’Oro Resurscenter Mo Gard Overbrook School for Alan Baynham Nordic Staff Training Website: Website: www.fsdb.org Consortium Tel: +39 - 071 - 724 51 Tel: +46 - 122 - 23600 the Blind Royal Institute for Deaf Centre for Deafblind www.nalagaat.org.il Lena Hammarstedt Tel: +33 - 1 - 4627 4810 Fax: +39 - 071 - 717 102 Fax: +46 - 122 - 23690 Tel: +1 - 215 - 877 0313 and Blind Children Services ITALY The Swedish Resoursce Fax: +33 - 1- 4627 5931 Email: info@ Email: lena. Fax: +1 - 215 - 877 2466 Tel: +61 – 2 – 9872 0366 Tel: +45 - 96 - 47 16 00 Lone Poggioni Centre for Matters Email: a.n.p.s.a@ legadelfilodoro.it [email protected] Email: [email protected] Email: alan.baynham@ Fax: +45 - 96 47 16 16 Danish Parents Regarding Deafblindness wanadoo.fr Website: www.mogard.se Website: www.obs.org NETHERLANDS ridbc.org.au Email: marianne.disch@ Association Tel: +46 87535940 GERMANY Ton Visser UNITED KINGDOM Barbara Mason Website: nud.dk; [email protected] Tel: +39 075 51 79 413 Fax: +46 87552368 Monika Brenes KEG-Viataal Groep Gillian Morbey Perkins School for the www.ridbc.org.au Website: www.nud.dk Email: [email protected] Email: lena.hammarstedt CBM Tel: +31 73 55 88 280 Sense Scotland Blind Debbie Karasinski Ole Mortensen @mogard.se; Tel: +1 - 617 - 972 7502 NETHERLANDS Tel: +49 - 6251 - 131 320 Email: [email protected] Tel: +44 (0)141 429 0294 Senses Foundation Inc. Information Centre for Marlies Raemaekers Website: www.mogard.se Fax: +49 - 6251 - 131 165 Website: www.viataal.nl Fax: +44 (0)141 429 0295 Fax: +1 - 617 - 972 7354 Tel: +61 - 8 - 9473 5400 Acquired Deafblindness Anna Lena Steenson Email: barbara.mason@ Bartimeus Email: Monika.Brenes@ SPAIN Email: gmorbey@ Fax: +61 - 8 - 9473 5499 Tel: +45 4439 1175 Specialpedagogiska perkins.org Tel: +31 - 343 - 526 650 cbm.org Pilar Gomez sensescotland.org.uk Email: dkarasinski@ Fax: +45 4439 1179 institutet (The Swedish Website: www.perkins.org Fax: +31 - 343 - 526 798 Website: www.cbm.org ONCE Website: www. senses.asn.au Email: [email protected] Email: m.raemaekers@ Institute for Special Wolfgang Angermann Tel: +34 - 91 - 353 5637 sensescotland.org.uk Website: Website: www.dbcent.dk bartimeus.nl Needs Education) German Deafblind Fax: +34 - 91 - 350 7972 Richard Brook www.senses.asn.au Inger Rodbroe Website: Tel: +46-15852300 Consortium Email: [email protected] Sense AUSTRIA The Danish Resource www.bartimeus.nl Fax: +46-15852317 Tel: +49 - 511 - 510 080 Website: www.once.es Tel: +44 845 127 0060 Christa Heinemann Centre on Congenital Pieter Hermsen Email: Fax: +49 - 511 - 510 0857 Fax: +44 845 127 0062 Österreiches Hilfswerk Deafblindness Kalorama anna-lena.steenson@ Email: w.angermann@ Email: Richard.brook@ für Taubblinde (Videnscenter for Tel: +31 24 684 77 77 spsm.se taubblindenwerk.de sense.org.uk Tel: +43 - 1 - 602 0812 Dovblindfodte) Fax: +31 24 684 77 88 Website: www.spsm.se Website: Fax: +43 - 1 - 602 081217 Tel: +45 – 41 - 93 24 65 Email: [email protected]; SWITZERLAND www.sense.org.uk Email: c.heinemann@ Email: vcdbf@ [email protected] Catherine Woodtli zentrale.oehtb.at servicestyrelsen.dk Website: www.kalorama. SZB Taubblinden- und Website: www.oehtb.at Website: www. nl Hörsehbehinderten- Networks dovblindfodt.dk BRAZIL Arthur Smit Beratung Acquired Congenital Interpreters Siblings Network Shirley Maia-Rodriguez FINLAND Visio (Rehabilitation) Deafblindness Deafblindness in Development Sabine Kersten Grupo Brasil de Apoio ao Heikki Majava Tel: +31 - 55 - 5800 695 Tel: + 41 41 228 6223 Network Adults Network Network Koningsbeemdstraat 3 Surdocego e ao Múltiplo The Finnish Deafblind Fax: +31 - 55 - 5800 890 Fax: + 41 41 228 6225 Ges Roulstone Dominique Spriet Mirjam Leusink Lommel, B 3920, Deficiente Sensorial Association Email: arthursmit@ Email: [email protected] Sense East QUENEHEM BP 53 Past. Petersstraat 68 BELGIUM Tel: +55 - 11 - 5579 5438 Tel: +358 - 9 - 54 95 350 visio.org Website: www.szb.ch 72 Church Street, Market Rue du Mont Saint Eloi Rijssen 7462 MT Tel: +32 11 53 35 93 Fax: +55 - 11 - 5579 0032 Fax: +358 - 9 - 54 95 35 17 Website: Jette Ehrlich Deeping, Peterborough, CALONNE RICOUART NETHERLANDS Fax: +32 11 53 35 93 Email: grupobrasil@ Email: kuurosokeat@ www.visiolooerf.nl Tanne, Schweizerische Lincolnshire PE6 8AL 62470 Email: Mirjam.leusink@ Email: siblingsnetwork@ kuurosokeat.fi; heikki. grupobrasil.org.br NORWAY Stiftung für Taubblinde UNITED KINGDOM FRANCE home.nl gmx.net [email protected] Website: Anne Lise Høydahl Tel: +41 - 44 - 714 7100 Tel: +01778 344 921 Tel: +33 - 3 - 21 61 16 16 Latin America Tactile www.grupobrasil.org.br Website: www. Fax: +41 - 44 - 714 7110 Fax: +01778 380 078 Email: AKS (Andebu Network Communication CANADA kuurosokeat.fi Email: henriette.ehrlich@ Email: ges.roulstone@ [email protected] Kompetanse- & Sandra Polti Working Group Stan Munroe GERMANY tanne.ch sense.org.uk Skolesenter) EDbN ARGENTINA Bernadette Van den Canadian Deafblind & Eberhard Fuchs Website: www.tanne.ch Website: www.adbn.org Tel: +47 334 38600 Ricard Lopez Email: Sandrapolti@ Tillaart Rubella Association Graf zu Bentheim Email: anne.lise.hoydahl@ UNITED KINGDOM Charge Network APSOCECAT & APASCIDE yahoo.com.ar; poltisan@ 15175 Prairie Road Tel: +1 - 902 - 737 - 1453 Schule-Blindeninstitut signo.no Amy Gray Co-ordinator: vacant C/ Almeria, 31 ATIC ciudad.com.ar South Solon OHIO 43153 Fax: +1 - 902 - 737 - 1114 Tel: +49 9312 092 119 Website: Sense International Communication Barcelona ESP 08014 Rubella Network USA Email: cdbanational@ Fax: +49 931 2092 1233 www.statped.no/aks Tel: +44(0)20 7520 0980 SPAIN Tel: +1-740-426-6728 Network Nancy O’Donnell seaside.ns.ca Email: eberhard.fuchs@ Knut Johansen Fax: +44(0) 20 7520 0985 Tel: +34-678-712-619 Fax: +1-740-426-6728 Ton Visser Helen Keller National www.cdbra.ca blindeninstitut.de Andebu Dovblindesenter Email: amy.gray@ Fax: +34-678-782-600 Email: Viataal Center for Deaf-Blind Roxanna Spruyt-Rocks Website: www. Tel: +47-33-438 700 senseinternational.org.uk Email: rlopez@ bernadettevandentillaart Theerestraat 42 Youths and Adults DeafBlind Ontario blindeninstitut.de Fax: +47-33-438 720 Website: www.sense sordoceguera.com @tiscalimail.nl Sint Michielsgestel NL - 141 Middle Neck Road Services GREECE Email: knut.johansen@ international.org Website: www.edbn.org 5271 GD Sands Point, NY 11050 Usher Study Tel: +1 - 905 - 853 - 2862 Diamanto-Toula Matsa signo.no Alan Avis USA Group THE NETHERLANDS Employment Fax: +1 - 905 - 853 - 3407 Hellenic Association of Roar Meland Sense South East Tel: + 516-944-8900 x326 Marylin Kilsby Tel: +31 - 73 - 55 88 111 Network Email: execdir@ Deafblind Eikholt Tel: +44 845 127 0076 Fax: +516-944-7302 Sense Fax: +31 - 73 - 55 88 994 Seija Troyano deafblindontario.com Tel: 30-210-6440689 Tel: +47 3288 9050 Fax: +44 845 127 0077 Email: nancy.odonnell@ South East Regional Office Email: [email protected] Nakskovinkatu 8 and 9 Website: www. Fax: 30-210-6440689 Fax: +47 3288 9052 Email: hknc.org New Plan House 78200 Varkaus, FINLAND deafblindontario.com Email: [email protected] Email: roar.meland@ [email protected] 41 East Street, Epsom Email: seija.troyano@ Jane Sayer HONG KONG, eikholt.no Website: Surrey KT17 1BL dnainternet.net Resource Centre for CHINA Website: www.eikholt.no www.sense.org.uk UNITED KINGDOM Manitobans who are Doreen Mui Evabritt Andreassen VENEZUELA Tel: +44–845 127 0076 Deaf-Blind (RCMDB) Hong Kong Society for Maria Luz Neri de Troconis Fax: +44–845 127 0077 Regional Resource TTY: +1 - 204 - 284 - 2531 the Blind Centre for Deafblind, SOCIEVEN, Sordociegos Email: Marylin.Kilsby@ Fax: +1 - 204 - 477 - 1390 Tel: (852) 2778 8332 de Venezuela, Asociacion sense.org.uk VKS Email: [email protected] Fax: (852) 2777 6559 Tel: +47-55-923 485 Civil Website: Email: Fax: +47-55-923 491 Tel: +58 212 9911037 www.rcmdb.mb.ca [email protected] Email: evabritt. Fax: +58 212 9911725 Mini corporate members Cindy Accardi Website: [email protected] Email: socievenac@ Rotary Cheshire Homes www.hksb.org.hk Tonhild Strand Hauge socieven.org; NEPAL Tel: +1 - 416 - 730 - 9501 ICELAND Skaadalen Resource [email protected] Renu Lohani Fax: +1 - 416 - 730 - 1350 Thorey Olafsdottir Centre Website: Society of deafblind Parents, Email: rchdirector@ Deafblind Association Tel: +47-22-703 702 www.socieven.org SDBP rogers.com of Iceland Fax: +47 - 22 703 715 Tel: +977-1 4600450/4427517 Website: www. Tel: 354-5536611, 354- Email: tonhild.s.hauge@ Fax: +977 1 4600450 rotarycheshirehomes.org 6981098 statped.no Email: [email protected]; Fax: 354-525-0001 Website: www.statped.no [email protected] Email: daufblin@ ismennt.is

60 • DbI Review • Ja n u a r y – Ju n e 2009