Number 56 • January 2016

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Network News

Acquired Deafblindness Network

Liz Duncan


CHARGE Network

Andrea Wanka

Tel: ++496251939797

Fax: +4916090309876

Communication Network

Ton Visser

European Deafblind Network

Ricard Lopez Manzano

Tel: +34-678-712-619

Fax: +34-678-782-600



Ibero Latin America Network

Vula Ikonomidis

Network of the Americas

Marianne Riggio

Outdoor Network

Joe Gibson

Tel: 4+4 (141) 429-0294


Research Network

Prof. Walter Wittich

Rubella Network

Joff McGill;

Social-Haptic Communication Network

Dr. Riitta Lahtinen & Russ Palmer

Tel: + 358 40 522 4201


Tactile Communication Network

Bernadette Van den Tillaart

Tel: +1-740-426-6728

Fax: +1-740-426-6728

Usher Network

Emma Boswell


Nadja Högner

Youth Network

Simon Allison

Tel: 0044 7798 882 496


CHARGE Network

Andrea Wanka reports:

Thoughts and insights from the DbI CHARGE Network

• Children with CHARGE will often do things differently – it is important to acknowledge and celebrate these.

• Pick your battles – they will often be able to hold out longer than you can!

• If there is a change in behaviour make sure the child is checked by the doctor in case something is causing them pain!

• The child is a child first and not a condition!

• They are amazing!

• Develop your diplomatic skills and be prepared to bargain and negotiate.
Personal collection

• Provide structure

• Give personal space

• Wait after giving new information

• Be aware of your position

• Be aware of sensory preferences

• Use positive language and be aware of trigger topics

• Use specific words for specific situations (to be sure it’s clear and not confusing)

Additional questions to the personal collection

• Is the other one ready to receive information?

• Is it clear what can be expected from the other one (trustful relationship)?

• Can we be sure that we are talking about the same; that we’re both knowing what is meant?

• Reflect the use of functional behavioral analysis to support professionals to determine the causes of anxiety in children with CHARGE

• How may the principles of Positive Behavior Support (PBS) and modified Cognitive Behavior Therapy (CBT) apply to the relief of anxiety driven compulsive behaviors and aggression?

For more information, Contact Andrea Wanka
( and check out

Communication Network

Conference journal report

Ton Visser reports:

First Academic Journal on Deafblindness published

Through the initiative of the University of Groningen’s Marleen Janssen’s, a member of DbI’s Communication Network, the first volume of the Journal of Deafblind Studies on Communication was published on Thursday, November 19, 2015. The journal is the first academic journal on deafblindness in the world and will be published in an open access format. The journal is aimed at students and professionals, and contains theoretical articles, evidence-based methods, and best practices.
Demand for knowledge from the field

We receive a fairly constant stream of questions from the field about the research from our Masters students”, says Marleen Janssen in response to the question what motivated the launch of the journal. She established the journal in cooperation with the DbI Communication Network, a group of experts from around the world in the area of deafblindness. The Network also acts as the journal’s editorial board. “The Network decided to go for a journal instead of a book. Additionally, by opting for an open access format, the knowledge and insights will be accessible to anyone across the globe”, says Marleen Janssen. The journal will be be addressing those in the field as well as researchers from other specialties who research the complex communications among those with a communication disorder.

First volume launched on November 19, 2015

The first volume of the Journal of Deafblind Studies on Communication was launched Thursday, November 19 during a meeting of the DbI Working Group on Communication (also known as the Communications Network) in Groningen, the Netherlands. During this meeting, the group started laying the groundwork for the second volume, which will be published in 2016. The Network is preparing for a conference to celebrate the 10th anniversary of the University of Groningen’s unique Communication and Deafblindness Masters program.

University of Groningen Library

The Journal of Deafblind Studies on Communication was developed in close cooperation with the University of Groningen Library. The technology to publish the journal in an open access format was developed by the library.

The URL of a new open access journal: The Journal of Deafblind Studies on Communication is:
For more information, contact Ton Visser ( or Marleen Janssen (

Conference on Communication and Congenital Deafblindness

First announcement

On the occasion of celebrating ten years of the International Masters of Education in Communication and Congenital Deafblindness at the University of Groningen1 in The Netherlands, the University will host a conference in 2016. The programme for the conference will be prepared by the DbI Communication Network2 in collaboration with the alumni of the University of Groningen Masters program.

Date: November
15–17th, 2016
Location: University of Groningen, The Netherlands
Title: Communication in the context of congenital deafblindness: ten years of studies on how knowledge and practice develops.
More information will follow.


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