Number 49 • July 2012 Remembering Lex Grandia (1950 – 2012) A message from the President eafblind International was formerly known Das the International Association for the Dear Friends and colleagues, Education of Deafblind People. s I write this introduction DbI Review is published twice yearly, the two Afor our Review I realise editions are dated January and July. what a mixed period we have The editor will be pleased to receive articles, had. We had our Board and news items, letters, notices of books and Management committee information on forthcoming events, such as meetings hosted by Vice conferences and courses, concerning deafblind President Bernadette Kappen children, young adults and older people. in New York this past May. I Photographs are welcome. think both were successful All written material should be in the English meetings and it was great language and may be edited before publication. to see so many people It should be sent for publication to arrive by the date below. attending. We were pleased with the Opinions expressed in articles are those of Lex Grandia. Immediate Past progress on networks. This is the author and should not be understood as President William Green and much of where DbI activity representing the view of DbI. I attended the funeral in takes place so it’s good to see DbI Review is also available on disk. If you are Aalborg on the 28th April. the energy and commitment. interested in receiving your copy in this format, Many people came to pay please contact: We were interested in the their respects and although developing arrangements for DbI Secretariat there was much sadness, as PO Box 143, Burswood the European Conference in you might expect, there was WA 6100, Australia Lille in 2013. Special thanks to also a sense of celebrating Telephone (08) 9473 5422 Valerie Taggiasco for the local Facsimilie (08) 9473 5499 Lex’s life and achievements. planning and Jacques Souriau TTY (08) 9473 5488 I was also recently reminded and his team on the scientific about Mike Collins, a former committee for the content. past president, as the We also had some Latin American Forum on interesting discussions around Deafblindness and Multiple social networking, how we Editor Disabilities hosted the second manage a ‘new world’ and Stan Munroe virtual conference dedicated the ethical issues that may Design to Mike’s memory. I think Geoff Dunn emerge over time. this is a great idea and a Distribution and DbI Membership We are sad to lose cost effective way to share DbI Secretariat our treasurer Ton Groot knowledge, although I don’t DbI Website Zwaaftink who is leaving Stan Munroe and Secretariat expect it to ever really fully Kentalis to take on a more Editorial Office replace all the benefits that senior role as a CEO. We wish CDBA Office, 2652 Morien Hwy, come with personal contact. Port Morien, NS, Canada B1B 1C6 Ton well in his new role and We are all looking forward Tel: 902-737-1453 know that he will remain to the ADBN conference in Fax: 902-737-1114 a friend. However we do Lund, Sweden in November. Email: [email protected] indeed extend our warmest Website: www.deafblindinternational.org The DbI management appreciation to Kentalis who committee will meet just will continue their support before the conference and have appointed Frank Kat allowing a number of us to take over Ton’s role. to participate in the event. Of course the celebrations Cover: Lex Grandia (1950 – 2012) We are delighted that DbI in New York were marred by was able to sponsor some the loss of our dear friend delegates, although we LAST COPY DATE FOR YOUR NEWS: 12 OCTOBER 2012 2 • DbI Review • JULY 2012 recognise that we never deafblindness and all the Contents manage to do as much as we commitment that’s shown A message from the President Page 2 would like. every day in lots of different As ever this is an eventful ways. Editorial and Contents Page 3 and busy period of our organization. A continuing Kind Regards Articles thank you to everyone Vice Presidents’ messages Page 4 who works in our field of Gill Morbey Memories of Lex Grandia Page 5 Mélodie’s Song Page 7 Editorial Dynamic assessment of children with deafblindness Page 9 Generating positive interactions Dear friends of DbI, in regular school settings Page 14 s Information Officer of ADbI and editor of DbI A new development (at Kentalis) Page 20 Review, I have the unique Empirical research in the field opportunity to inform you of deafblindness Page 24 about what’s happening in Shelter from the storm Page 45 the world of deafblindness. It gives me immense Yoga: Lead us from darkness pleasure to witness how to light Page 50 much this specialized field pleased to feature an article has advanced in the past Network News Pages 47-49 by Drs Moore and Steer from 40 + years to help improve ADbN, CHARGE, the University of Newcastle the lives of people with Communications, EDbN in Australia relating to this disability throughout inclusion of students with so much of the world. Country News Pages 29-44 deafblindness or multiple While there are so many Australia, Brazil, Canada, China, disabilities in the public exciting things happening Guatemala, Greece,Ireland, school classroom. internationally in this field, Kenya, Romania A must read is ‘Mélodie’s it is often a challenge to song’, a heart warming get reports from people Conferences and announcements story about communication who are doing significant ADBN Preconference on seniors through the gift of music. things. Our website (www. with deafblindness Page 13 This story could have been deafblindinternational.org) 8th DbI European Conference Page 18 right out of Musicophilia and each edition of this – ‘Tales of Music and the The daily life of deafblind people – magazine, including this one, Brain’ by Oliver Sacks (www. Nordic Conference 2012 Page 23 attempts to highlight what is randomhouse.ca). just a sample of stimulating 10th Helen Keller World As usual, this edition programs that are making Conference – First Announcement Page 44 announces various upcoming life better for people with conferences: DbI ADBN deafblindness. DbI News and Membership in Sweden, November In keeping with a popular Membership Page 55 2012, DbI European in Lille initiative from past editions, William Green, past President of DbI Page 56 France, August 2013 and we present again several the World Federation of Secretariat News Page 58 articles of a technical Deafblind Conference in the nature. Two articles are from DbI Board Membership 2011-2015 Page 60 Philippines, November 2013. doctoral students working An interesting conference Membership Information Pages 63-64 under the supervision of Dr. reported by Vula and Shirley Marleen Janssen, who heads from Ahima/Grupo Brasil, up the Congenital Deafblind was the recent Ibero-Latin Communication program at the University of Groningen in the Netherlands. We are (continued on page 55) JULY 2012 • DbI Review • 3 SubVice headPresident report Vice Presidents’ reports Bernadette Kappen reports: he Strategic Plan people to donate in honor being planned for the fall to has been the driving of someone, creating options put a plan together. At the Tforce for Deafblind for people to use their mobile Board Meeting in May we International. At the May phone to donate, writing had fund raising professionals 2012 Board meeting the proposals for specific projects from Changing Our World members focused on the to organizing marathons. (www.changingourworld. goal related to fundraising. The idea of awareness of com), a company that assists The members were asked to DbI was a constant theme organizations in their efforts dream big and think about throughout the discussions. to raise money, discuss how how additional funds can One idea was to have a we might begin a program. support the work of DbI and day set aside each year for Changing Our World will be especially offer increased deafblind awareness. This invited to the fall meeting to opportunities for members would be helpful in getting assist us with developing the from developing countries. people interested in possibly DbI plan. The Board divided into donating but also help This is a very exciting time small groups and discussed countries promote the needs for DbI. Our success with options to raise money. The of people who are deafblind. fundraising will allow DbI to conversations all focused on The next step will be to grow and reach out to more an increased awareness of write a fundraising plan and people around the world. If deafblindness along with circulate it to the Board for you have ideas on how we possible ways to raise money. comments. Projects will be can move ahead with the Ideas ranged from identifying prioritized and funds sought strategic initiative you can companies that might be for these activities. A meeting contact Stan Munroe and he interested in our mission, with chief executive officers will collect these suggestions. setting up a mechanism for from several organizations is Carolyn Monaco reports: ere at DbI our in the development of our Significant progress has vision “to be the 2012 - 2015 strategic plan. been made in “enhancing Hinternational This plan continues to drive our organisational capacity” association which what we do, how we spend through the ongoing promotes the awareness of our money and how we secretariat and information deafblindness as a unique measure our success as an officer functions as well disability and to influence organization. as increased support to for appropriate services for Our strategic plan was the coordination of our deafblind people around reviewed and updated in networks. More specific the world” and our purpose May 2012 at our Board individual membership “to support professionals, meeting in New York and recruitment plans are being families and people who are is available on the website implemented and our efforts deafblind to raise awareness under the tab “About to seek recognition of DbI of deafblindness and to DbI”.