Number 54 • January 2015



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DbI Review


Number 54 • January 2015
Deafblind International was formerly known as the International Association for the Education of Deafblind People.

DbI Review is published twice yearly, the two editions are dated January and July.

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 are welcome.

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 in this format, please contact:

Matthew Wittorff,
DbI Secretariat
PO Box 143, Burswood
WA 6100, Australia
Email: secretariat@deafblindinternational.org
Telephone (08) 9473 5422
Facsimile (08) 9473 5499
TTY (08) 9473 5488

Editor
Stan Munroe

Design
Geoff Dunn

Distribution and DbI Membership


DbI Secretariat
Email: secretariat@deafblindinternational.org

DbI Website


Stan Munroe and Secretariat

Editorial Office


CDBA Office, 2652 Morien Hwy,
Port Morien, NS, Canada B1B 1C6

Tel: +1 902-737-1453


Fax: +1 902-737-1114

Email: information@deafblindinternational.org

Website: www.deafblindinternational.org

Cover: Rubella immunization time in Tanzania



LAST COPY DATE FOR THE NEXT EDITION: 15 MAY 2015





A message from the President



Dear Friends and colleagues,


Our last Management Committee (Man Com) and Board meeting were held in Belfast during the ADBN conference in November. Some of us also attended the Usher Syndrome pre-conference. As usual ADBN’s conference was packed with interesting presentations and workshops. A great week all round. There is more on the conference in this edition so I will leave you to read for yourself.

DbI was delighted to welcome Lord Low, President of ICEVI to our meeting. We were grateful for Lord Low’s contribution to our Board and his presentation at the AGM. The World Federation of Deafblind invited us to their meeting but unfortunately our dates clashed. Nevertheless it’s great to be ever developing links with our partners.

We are currently looking at our budgets for next year and in particular sponsorships. We have a very small budget but are all too aware that the demands for people to attend events and conferences are increasing. Fundraising remains a struggle and there are no easy answers here I’m afraid.

It was also good to welcome James Thornberry from Sense International and Tony Best, chair of the scientific committee for the DbI world conference in Romania in May 2015. The abstracts are coming in and Tony is delighted with how the programme is shaping up. The registrations are also coming through. Those of you who have organised DbI conferences will remember only too well how important it is to get this right. Congratulations to Denmark for organising the next DbI European conference in 2017. They have already started their work which is fantastic.

The Man Com is equally interested in the progress of nominations for 2015. Huge thanks must go to Cathy Proll and her team for guiding DbI through the process. We are really keen that our members take an active interest and vote for their officers and Board membership. I offer many thanks to the Board members who contributed to a review of the strategic plan. Carolyn Monaco and Matthew led this session. It will be the job of the new/refreshed Board in 2015 to check they are happy with the draft strategy or make their changes.

We take our responsibilities for Networks very seriously and Lucy Drescher gave an interim report. The annual reports will be available in January 2015 and we look forward to hearing from all our colleagues and getting the up to date news.

It’s important that DbI recognise the contributions that so many of you make. Without your commitment we wouldn’t be able to have such an energetic and inspirational organisation. So if you haven’t sent your nominations for awards to Bernadette and her team, please do so now.

So indeed it’s a busy time with lots going on and as ever our Review will bring you up to date with all the activities. Finally Sense is delighted to be following in the footsteps of Royal Dutch Kentalis and sponsoring this edition. Happy reading and all the best from everyone at DbI.


Kind Regards

Gill Morbey

President

Editorial

Welcome to the 54th edition of DbI review.

This edition begins with the theme of conferences. Just around the corner is the 16th DbI World Conference, hosted by Sense International and Sense International Romania during the last week of May 2015. Conference Chair Tony Best has an interesting update that should entice potential participants to register soon to attend this – the first world conference held in Eastern Europe!

In early November, Sense Northern Ireland hosted the Usher Syndrome Conference (the first since 2010) followed by the 10th ADBN Conference. Both were smashing successes. This edition features a sampling of the many practical and provocative plenary and workshop presentations featured during the full five days of these events.

Several articles featured from the Usher preconference included: Emma Boswell’s overview, a shortened version of Megan Mann’s brilliant presentation about the personal Emotional Journeys experienced by several individuals from the UK; and from Mark Dunning, parent of Bella with Usher Syndrome (who was in attendance with her Dad) and Chair of the USA based Usher Coalition, an emphatic declaration of how important family members are in fostering key genetic research into Usher Syndrome.

This edition also presents just a few of the ADBN Conference presentations, including: a brief overview from the editor; DbI President Gill Morbey’s welcoming address; a philosophical plenary from Henrik Brink about ‘working as professionals’ in the field of deafblindness; and a detailed description by Angela Wills of a trekking adventure in Western Australia undertaken by a group of adventuresome individuals with Usher Syndrome.

Once again, DbI Review magazine features another paper in the series of CHARGE Syndrome articles from Dr. Tim Hartshorne and his associates. It should be noted that Dr. Hartshorne is another parent of an individual with a sensory related disability who has taken on a significant professional role in the deafblindness field.

Sense International, a co-sponsor of the upcoming DbI World Conference, has several international and ground-breaking articles featured in this edition. Two articles in particular report on the long awaited introduction of the rubella vaccine in the sub-continent of India and in Tanzania, East Africa. Other articles include: a report on educational programs for deafblind children in East Africa; a highly successful approach in Peru that resulted in deafblindness being now recognised by law in that country, and Cristiana Solomie’s inspiring story (see Country reports) detailing the journey taken by Sense International (Romania) to improve the lives of children with deafblindness in her country.

It’s always special to read the Country Report section to hear about the significant progress taking place. Take Brazil for example, with the report from Grupo Brasil that explains how their efforts led to an important public policy change in the large state of São Paulo that ensured that deafblind students have the right to a guide interpreter or an intervenor to support their inclusion in regular schools throughout the state. In Hungary, through the efforts of the Hungarian Deafblind Association (SVOE), the government included deafblindness as a category in their 2011 National Census. Consequently, they were able to determine the number of individuals with deafblindness in the country necessary to provide necessary information for developing their service plans. Similarly, the Republic of Ireland published an article titled ‘Deafblindness in Ireland’ providing the Anne Sullivan Centre with the opportunity to raise awareness of Deafblindness in Ireland and to campaign for the improvement of services.

The magazine would not be complete without reports from the various Networks. Check out new plans for a conference in the report from the Communication Network. Follow the activities of one of our newest networks, the Youth Network. Don’t hesitate to contact Simon to obtain a copy of their recent publication ‘A Collection of Inspirational Stories’ which was launched at the recent ADBN conference. Their Network production of the Helen Keller story provided the entertainment for the opening night of the conference.

Special honours were bestowed on two past members of DbI who represented the Perkins School for the Blind. The late Michael Collins, former President, was posthumously enshrined in the Hall of Fame for Leaders and Legends in the Blindness Field. Aubrey Webson, who served briefly on the DbI Board, was named Antigua and Barbuda’s Permanent Representative to the United Nations and Head of the Antigua and Barbuda Office in New York. We thank them both for their contributions to DbI.

Finally, DbI Review is pleased to once again have a sponsor – this time Sense (UK) supported the publication and distribution of this edition. Check out their colourful advertisement near the end of the magazine. We hope other organizations may offer some degree of sponsorship for future editions.

On a personal note, this is the 10th edition that I have had the privilege of being editor. Thanks so much to the many contributors and to the DbI Board for its continued support.
Stan Munroe


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