Network morning

1. CHARGE NETWORK

Tentative structure for the session:

○        10 minute presentation by Gail Deuce on ‘Disclosure to individuals with CHARGE’

○        10 minute presentation by Steve Rose on ‘Feeding challenges faced by individuals with CHARGE’

○        A  time for sharing and discussion and future network activity

Steve Rose - Head of Service/ Specialist Speech and Language Therapist 

Gail Deuce - Consultant Teacher

Family Education and Advisory Service

Sense South East - UK

2. COMMUNICATION NETWORK

State of the art from the Master Communication and Congenital Deafblindness

This morning five graduated masters in Special Needs Education present their theses. They finished their master last year at the University of Groningen, the Netherlands. They all did an exciting research project in their home countries with people who are congenital deafblind at their own institutions. Lecturers and supervisors of this master are the members of the DbI Communication Network: Marlene Daelman, Marleen Janssen, Flemming Ask Larsen, Paul Hart, Anne Nafstad, Inger Rodbroe, Jacques Souriau and Ton Visser. The graduated master students do a presentation of 20 minutes. After each presentation there is 5 minutes time for discussing their topic with the audience. When all the theses are presented there is time for more discussion and questions, also about the master’s program.

09.30 - 09.40:  The Master’s program – Marleen Janssen, the Netherlands

09.40 - 10.05:  Development of Dialogical Thinking – Jutta Wiese, Germany

10.05 - 10.30:  Towards Narrative Based Conversations – Aline Hanning, Jordan

10.30 - 10.55:  Tactile bodily Elements within Togetherness – Marga Martens, the

                       Netherlands

10.55 - 11.25:  Break

11.25 - 11.50:  A Sign Language Perspective on the Communicative

                       Togetherness – Kari Brede, Norway

11.50 - 12.15:  Can Declarative Communication Improve by Intervention? –

                       Petra Hagen, the Netherlands

12.15 - 12.30:  Discussion and Questions – Marleen Janssen

Marleen Janssen
University of Gronignen, the Netherlands

3. CONGENITAL DEAFBLINDNESS IN ADULTS NETWORK

Our preoccupation is staff training of the professional who are with the lowest qualifications and in many situations; they are the professional who are most in contact with the CDB person.

It would be a morning to try to set up some kind of network work between that type of staff who can’t come and share works in the conference.

Dominique SPRIET

Quenehem

Foyer d'Accueil Médicalisé

CALONNE-RICOUART, France

4. EUROPEAN DEAFBLINDNESS NETWORK - EDbN

 This will be an information and discussion session about:

1. EDbN - who we are, our goals etc and how we can all lobby/campaign/advocate together at a European level;
2. The status of the recognition of deafblindness in different countries;
3. Brussels work and the progress of the proposed Equal Treatment directive;
4. Some information about the work of the DbI Advocacy group at European level;
5. Listen 2 Me 5 in Olomouc in the Czech Republic, 2010

EDbN
We are deafblind people, family members, siblings and professionals working
together to achieve recognition of deafblindness in Europe. One of our
principle activities is to lobby together to ensure that the needs of deafblind
people are included in the policy making work of the European Union.
In 2004 EDbN members successfully lobbied MEPs in the European Parliament to
sign a Written Declaration on the needs of deafblind people that was then
adopted by the Parliament. Since then members of EDbN have been using the
Written Declaration in their countries to try and get recognition of
deafblindness as a unique disability.

The speakers will be Lucy Drescher, Ursula Heinemann and Ricard López;
Mr. Wolfgang Angermann and a representative of the Hosting Czech Organization of
Listen 2 me V. will probably also join.

5. SIBLINGS NETWORK

The general idea for the network morning is the following:

* Introduction of the siblings network

* Presentations about some of the important issues and concerns brothers and sister 
may have

* The future of the siblings network: During the summer we will start working on a kind of business plan for the network with goals we would like to achieve and future activities. During the network morning we would like to discuss some of our ideas with the participants.
 

Sabine Kersten
Lommel, Belgium

6. TACTILE COMMUNICATION NETWORK

A Journey Through the World of Touch

Activities and Topics:

The Tactile Communication Network has produced a DVD and will present this at the network morning.

The presented DVD will follow the experience of persons -- both deafblind and seeing/hearing -- as they explore, interact and communicate with each other in the tactile mode. A person with sight and hearing needs a radical shift in perspective in order to experience and understand the world from a tactile perspective, which is the way that congenitally deafblind people experience their world.  When tactile experiences become meaningful for both partners in an interaction, this becomes the foundation for exploration of new environments, development of meaningful communication, and the building of friendships.  The DVD offers specific images in order to illustrate this shift in perspective required to enter the rich unique world of tactile experience, inhabited by congenitally deafblind persons. The members of the Tactile Communication Network hope to enhance shared understanding between seeing/hearing persons and deafblind persons, and to increase joyfulness in our mutual exploration of the tactile world in which we all live.  

After showing the movie, the network members will invite the participants for a discussion and thought sharing activity. They will address the following questions:

-- Which experiences are helpful for seeing/hearing persons as they seek to shift to a tactile perspective?

-- Which specific understandings and practices help to make tactile communication and mutual tactile exploration successful?

The Tactile Communication Network also wishes to open up the possibility of extending contact beyond this meeting with members of Deafblind International who are interested  in deepening our understanding of living in a tactile world.

Bernadette Van Den Tillaart

Speakers:

Bernadette Van Den Tillaart

Gunnar Vege (Norway)

Barbara Miles (USA)

Paul Hart (Scotland,UK)

7. USHER STUDY GROUP

The Usher Study Group is for people with Usher, their friends, families and professionals who work with Usher people or who research into Usher syndrome. Indeed, anyone who is interested in Usher syndrome is welcome here!

Our topics this year will include the latest updates on Usher research and genetics as well as a session on how technology can improve the lives of those with Usher.  Some people with the various Types of Usher will be speaking as well as Kerstin Möller and, we hope, Claes Möller, who are both involved in research and genetics.

We look forward to meeting you!

Marylin Kilsby

National Usher Coordinator
Based at Sense South East, UK

Usher, Technology and You

09.30       Communication check

09.45       Usher information

a) What is Usher?             
b) Balance             
c) Questions             
Speaker: Marylin Kilsby 

10.15      Usher research updates and genetics

Speakers: Kirsten Moller, Claes Moller 

11.00       Break 

11.15       My life with Usher - 2 or 3 speakers (one local)

Nick Sturley (UK) - Technology and Usher (to be confirmed) 

11.40       Usher websites

- Usherlife    
- www.usher.syn.org 

12.00       Discussion / what’s next              

- Usher Study Group at ADBN conference                                                         
- Usher Study Group e-group?             
Led by Tamsin Wengraf and Marylin Kilsby           

12.20      Completing the Feedback Form 

12.30       Session closes

8. RUBELLA NETWORK

Nancy O'Donnell

Helen Keller National Center

Coordinator of Special Projects