Number 44 • June - December 2009
Deafblind International was formerly known as the International Association for the Education of Deafblind People.
DbI Review appears twice yearly, the two editions are dated January-June and July-December.
The editor will be pleased to receive articles, news items, letters, notices of books and information on forthcoming events, such as conferences and courses, concerning deafblind children, young adults and older people. Photographs and drawings are welcome; they will be copied and returned.
All written material should be in the English language and may be edited before publication. It should be sent for publication to arrive by the date below.
Opinions expressed in articles are those of the author and should not be understood as representing the view of DbI.
DbI Review is also available on disk. If you are interested in receiving your copy on disk, please contact:
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TTY (08) 9473 5488
Distribution and DbI Membership
Eileen Boothroyd and The Secretariat
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Tel: +44. 0845 127 0060
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A message from the President
Dear friends and colleagues,
It’s winter here in the northern hemisphere and, as I write, the snow is falling! Our colleagues who run the Secretariat in Australia are ready to spend time on the beach with temperatures soaring into the high 30 degrees. Wherever you are and whatever the weather I send you the compliments of the season!
In the autumn the DbI conference was held here in Italy, and not far from the Lega del Filo d’Oro – on the coast in Senigallia. It was a moment of considerable pride for me and my colleagues and en event that welcomed 450 people form 40 countries. There was a programme involving 120 sessions, including plenaries and workshops, and we enjoyed a number of beautiful historical settings to achieve this. We had a lot of positive feedback and will make sure the problems people reported will be taken account of and used in organisational learning.
After hosting such a high profile event we feel that we are even closer to the national recognition of deafblindness.
I had the great pleasure to attend the WFDB event in Uganda and to strengthen our bond of partnership. There is a full report of the meeting on page 44. We are conscious of the great progress that ICEVI is making with the Education for All initiative and know we have an opportunity to add to this campaign. Our Vice President, Bernadette Kappan has attended the recent meeting of the Global task Force and we will hear more of this next time. Larry Campbell writes for us on page 33 and I urge you to consider his request for contact.
I had the very great honour to be in the Czech Republic last month to witness an agreement that pledges support for the development of a service for young adults. The Family Association has been lobbying for this style of development for some years. Now things will start in 2012. A great achievement.
We are already beginning to think about the future – and to 2011 when we will meet in Brazil. The committee that works on nominations will be starting its work shortly. Work on the Conference is moving quickly and I will be travelling to Sao Paulo, with ManCom, to meet the team again
Thank you all.
We celebrate success in this issue!
A great story of personal endeavour and plain hard work is the backdrop to our cover story about the development of the first specialist service for adults in Slovakia. Parents and professionals have worked together, with young people, to create a way of living that treats each deafblind person as an individual with a future.
Another young person, in Norway, is certainly living his life on the edge – with a white water rafting trip that involved hiking and camping. Experiencing the thrill-including the fear and anticipation of the next torrent of white water – made this holiday “5 star” for this young extrovert and his friend. Keeping the balance between safety and experience is a continual tension – happily achieved with great planning this time.
It’s very good to have a piece from Jan van Dijk and Kathy Nelson. They are writing about the field of neurobiology and what it can contribute to our work with deafblind people. This well researched, and compelling, article will provide a stimulus for us all to learn more. And a new DVD will be out soon to support practice in this area.
I have been fortunate to visit Bangladesh. It’s a fascinating country with warm, welcoming people but presents a very challenging environment for disabled people. So it’s great to read about the Sadat and Rizwan and developments there.
I did say at the start that we are celebrating… and formal congratulations and honours have been recorded later in this magazine. I would like to say, as I hand this role on to someone new, that it’s been a great pleasure to have been in contact with so many people world wide over the time I have edited the magazine! It has confirmed my long held view that the only way forward is by sharing our ideas and learning from each other. Your participation has made a real difference.
As you know already, the intention is to strengthen the way DbI provides information and we are doing that by investing in the website and other “e” ways of working. We have already started but there is still a lot to do. It’s a very exciting time for DbI and we can’t do it without your continued support!
A message from the President page 2
Editorial and Contents page 3
Henrieta Hejdeckerova and Janka Sarisska page 4
Lessons learned from Neurobiology
Jan Van Dijk and Catherine Nelson page 10
Air, Fire and WATER!
Report from Anne Nafstad page 12
SuperSibs –The Australian Experience
Karen Wickham page 14
Hope for deafblind children in Bangladesh
Biju Mathew page 30
Ricard Lopez page 34
A new communication device
Alfredo Alvorado page 36
ADbN, Congenital Deafblindness, CHARGE, Siblings, Usher Study Group, Rubella pages 16-21
Australia, UK, Romania, India, Ireland, Malta, Moldova pages 23-28
Awards page 42
Our partners reports
ICEVI Larry Campbel• page 33
WFDB Lex Grandia page 44
ADbN Conference – Denmark page 22
DbI Communications course – Paris page 29
Touch you Touch me! – Finland page 32
8th National Deafblind Conference – Australia page 38
DbI European Conference – report and DbI awards page 39
Deafblind Rehabilitation and Cultural Week page 48
Secretariat and membership news page 49
Membership form page 51
Members contact details page 52