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 • JANUARY – JUNE 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 JANUARY – JUNE 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.