DbI Review

Number 51 • July 2013

Deafblind International was formerly known as the International Association for the
Education of Deaf-Blind People.
DbI Review appears 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 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 in text-only format in the form of an electronic file. If you
are interested in receiving your copy in this format, please contact the DbI
Secretariat.

DbI Secretariat
PO Box 143, Burswood
WA 6100, Australia
Telephone (08) 9473 5422
Facsimilie (08) 9473 5499
TTY (08) 9473 5488
Editor
Stan Munroe
Design
Geoff Dunn
Distribution and DbI Membership
DbI Secretariat
Email: [email protected]
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: [email protected]
Website: www.deafblindinternational.org
Cover: Charlotte van de Molengraft

A message from the president

Dear Friends and colleagues,

As I am writing I have been reflecting on the many challenges we all seem to be
facing. It’s very difficult with finance nowadays; grants and donations are getting
harder to achieve. We are all needing to work twice as hard in some cases just to
stand still and I know many organisations are cutting back.
Set in this rather dismal context it was wonderful to see over 400 delegates at the
second joint Asian conference of ICEVI and DbI in Ahmedabad India this past April.
The conference was hosted by the Blind People’s Association and Sense
International India who did a fantastic job in welcoming delegates from over twenty
two countries.
DbI held its management committee meeting in Ahmedabad prior to the conference
where amongst many things we are starting to prepare for the world conference in
Romania in 2015. We also received updates from our networks which you can read
more about in this Review.
William Green attended the European ICEVI conference in Istanbul on our behalf
and of course we are looking forward to the DbI Conference in Lille later in August.
We will have our usual Management Committee and Board meetings in France and
Elvira and Bronte are preparing for our AGM.
I know the work of the WFDB continues and we wish them the best for their
Conference and General Assembly in November in the Philippines. I was particularly
interested to see that the European Blind Union (EBU) held its first Deafblind
Women’s Forum.
So despite my rather depressing opening, clearly our energy levels haven’t dropped
and we are continuing to do some amazing things. Our magazine, as ever, gives
you so much more information and of course there is our website and facebook
page where we can post your news.
Thanks to all our partners and members for keeping us up to date with all their news
but we can always do with more!

Kindest regards to all

Gill Morbey
President DbI

EDITORIAL
Dear Friends,
My job as Editor has become more and more interesting with each new edition. This
is a great vantage point from which to see the scope of what is happening around
the world and then have the opportunity to communicate this information to our
members. I know that the authors are pleased that their work is promoted through
this magazine; I’m sure they would also be quite happy to have follow-up comments
from the readers.
I begin my message by referring to two articles: Living with Deafblindness – A Better
Alternative and Napoleon’s Code in Europe. The former article is a collection of
thoughts from a focus group of individuals who are deafblind from the Kalorama
Foundation in the Netherlands as they relate to the tragedy of the Belgian twins who
took their lives earlier this year. The latter article are observations from
Neuropsychologist and Psychogerontologist Christine Aktouche about what she
calls the tragedy of the serious loss of self-esteem that so many seniors are
experiencing with the growing incidence of multi-sensory impairment. While there
are stark differences between the articles based on the reporter’s perspectives, the
conclusions mesh together closely. The Kalorama folks suggest there is much that
society can do to support them to lead safe and meaningful lives; while Christine
suggests that there are services and sensory aids available but seniors need to
make greater use of them to regain their loss of self- esteem.
In this edition we present articles covering such wide ranging topics as educational
forums in Brazil; openings of centres of excellence and special workshops; Ton
Visser’s tour of the deafblind service programs in India; William Green’s visiting
fellowship in Australia; a study of services for multi-disabled students in Cordoba
State in Argentina and a detailed study from Denmark about psychosocial issues
prevalent in many children with Usher Syndrome. There are articles from Sense
International which focus on the important work they are doing to support the
development of services in the seven countries in which they operate.
Take a look at the article from Smile-Japan which traces Shin’s persistence during a
recent Asia-Pacific consultation process to demonstrate that the slogan ‘Nothing
About Us Without Us’ is a real working tool to ensure that people who are deafblind
have a real ‘say’ in the implementation of the United Nations Convention on the
Rights of Persons with Disabilities.
From a personal perspective, it is exciting to feature a report on the opening of the
Resource Centre for Congenital Deafblind Persons by the Ontario Chapter of the
Canadian Deafblind Association. This is a dream come true that a Centre of
Excellence, developed along the line of similar facilities in the Nordic countries,
Scotland and the Netherlands, is now operating in Canada.
Conferences represent a significant feature of the work of DbI; so as usual, this
edition makes a number of announcements about upcoming conferences and
workshops. Just weeks following the publication of this edition, the 8th DbI European
Conference will be in full swing in Lille, France. Preceding the conference, the
CHARGE Network has organized a one day conference on August 24th focussing
on Social-Emotional Skills and Communication of children with CHARGE Syndrome.
Other conferences in preliminary stages of development are the 10th ADBN
Conference, planned for Belfast Ireland in November 2014, and the 16th DbI World
Conference planned for Bucharest, Romania in the last week of May 2015. More will
be publicized on these events in future editions.
It seems that each edition of the review would not be complete without a feature
article about a DbI related conference. The lead article in this edition is an overview
of the very successful 2nd Joint ICEVI-DbI Asian Conference held this past April in
Ahmedabad India, hosted by Sense International India and the Blind People’s
Association. Check out their conference website for more information and
conference proceedings.
Happy reading,

Stan Munroe

Vice Presidents’ reports

Bernadette Kappen reports:
Sharing is such a large part of what DbI members do. When we are asked what is
special about Deafblind International we can all agree that sharing information with
our colleagues is at the heart of DbI. Sharing helps us grow and provide better
programs and services for individuals who are deafblind. We look forward to getting
together to get updates on our programs and to learn about new projects. This is a
unique aspect of our organization.

This year Deafblind International has continued to share information through DbI
Review, network conferences, the website and the new e-news. In reflecting back on
our history, the area of sharing information and knowledge has exploded. As the
economic situations around the world continue to struggle, it will be important for us
to find ways to continue sharing. The website is one way to exchange information
and I encourage you to send information throughout the year. There are so many
wonderful stories and we can only put so many into the DbI Review. We might think
about developing a wiki where we can comment on a topic and assist each other.
The opportunities we have with technology are endless and I think will help us
expand our desire to share with our colleagues.
The Conference in Lille in August will bring us face to face and it will also be an
opportunity to hear from you about other ways you might like to share information.

Bernadette
Carolyn Monaco reports:

The first six months of 2013 have seen DbI produce our 51st Edition edition of the
DbI Review. Our 50th has since been translated into Spanish and French and both
are now available on our website. The soliciting and distribution of field related
information that is of international interest is encompassed in our vision, our purpose
and identified in our 2012 to 2015 Strategic Plan. Sincere thanks to the team of
people who write, submit, translate, edit, design, print, mail and post, enabling us as
an organization to see this portion of our vision through to fruition.
In April I attended the Management Committee Meetings and the 2nd Joint Asian
Conference of ICEVI and Dbl, “Towards an Inclusive Tomorrow” in Ahmedabad
India. As always, it was a pleasure to meet with our Management Team and once
again work our way through agenda item discussions and decisions that impact the
future of this organization. It was also a wonderful experience to participate in this
conference and begin to develop a better understanding of services and programs
available to people in this region of the world, as well as to hear about some of the
more inclusive opportunities that are being realized. Our hosts couldn’t have been
more welcoming and it was a real pleasure to be there.
We now turn our attention to the upcoming meetings and European Conference in
Lille France at the end of August. Looking forward to seeing some of you there! For
those unable to attend we will make every effort to share what we learn through
upcoming editions of Review and the website. Have a great summer!

Carolyn

Deafblind International …
How we benefited from membership
“In each edition of the DbI Review going forward, we would like to highlight an
individual, a group of individuals or an organization that would be willing to share
how they benefitted from membership in DbI. In this issue I would like to share one
of the many ways that I personally and the organizations I am affiliated with have
benefitted.”

Carolyn Monaco – DbI Vice President

The Canadian Deafblind Association’s membership in DbI dates back to the mid
1970’s when John McInnes initially became involved in this organization and
encouraged other organizations and individuals across the country to do the same.
Over the last 40 years all aspects of deafblindness in Canada have benefitted from
their affiliations with DbI. Individual members, staff working for corporate members
as well as students in our Intervenor and Specialist Teacher of the Deafblind
Programs have accessed valuable information from both the DbI Review Magazine
and the Website. Canadians have attended DbI conferences and we hosted the
International Conference in 2003 which provided significant opportunity for face to
face networking with colleagues from around the world, an experience many
Canadians remember fondly to this day.
In 2008 the Ontario Chapter of CDBA organized a four person study group tour. The
team visited programs in Denmark, England, Norway and Scotland, all as a result of
previous connections made through DbI. We will be forever grateful to our hosts for
their time, effort and willingness to share their knowledge and show us their centres
and programs.
The ultimate result of these visits was that our dream to build a Resource Centre
was realized. Each program we visited and each person we talked to influenced the
outcome of the final product in some way. I believe that it’s important that we
recognize that the catalyst for those initial connections came through our
membership in Deafblind International.

More detailed information and photos of the CDBA Ontario Chapter Resource
Centre can be found in this edition of the DbI Review.

ICEVI-DbI 2nd Joint Asian Conference

‘Towards an Inclusive Tomorrow’ April 5-7, 2013 – Ahmedabad India

The 2nd Joint Asian Conference of DeafBlind International (DbI) and International
Council for Education of the Visually Impaired (ICEVI) was hosted by the Blind
People’s Association (BPA) and Sense International (India) in Ahmedabad, India,
April 5-7, 2013. The conference, attended by some 413 participants from 22
countries, was considered an unprecedented success. The participants included
officials from Governments in the region, international non-governmental
organizations, professionals from universities, teachers, parents, persons with
disabilities, voluntary organisations, social workers and general education
institutions.
The conference was opened by Mrs. Stuti Kacker, Secretary, Department of
Disability Affairs, Ministry of Social Justice and Empowerment, Government of India.
Mrs. Gillian Morbey, President, DbI and MNG Mani, CEO, ICEVI welcomed the
participants on behalf of DbI and ICEVI, respectively. ICEVI and DbI expressed
gratitude to Dr. Bhushan Punani, Regional Chairperson, ICEVI West Asia Region
and Mrs. Nandini Rawal, Treasurer, ICEVI, both representing the Blind People’s
Association and Akhil Paul, Director of Sense International (India) for jointly hosting
the event in such a grand manner.
Using the theme ‘Towards an Inclusive Tomorrow’, the conference focused on
education, technology and advocacy. The Scientific Committee chaired by Mrs.
Vimal Thawani, (Chair, BPA-India), along with her members from India, Nepal and
the Philippines, ensured that the program was tight, meaningful and did justice to the
theme and focus areas. There were close to 130 speakers in the Plenary and
Concurrent sessions occurring throughout the three day event.
On Opening Day, April 5, various dignitaries made very pertinent statements
connected with the theme of the conference. Mrs. Stuti Kacker mentioned that
“persons with disabilities should be treated as equal citizens who have a right to
services”. Mr. Pincha, the Chief Commissioner, Persons with Disabilities, New Delhi,
himself a blind person, said: “that quality of services is more important than the
mode of delivery of services”. Mr. Kevin Carey, President Royal National Institute of
the Blind suggested that: “blind persons need to be given training in modern
communication techniques and technologies. Shishna, a girl with deafblindness,
said that she wanted to grow up as normal as possible and achieve all the dreams
like any other person has. Dr. Jan van Dijk, an expert in deaflindness and multiple
disabilities, demonstrated through a video that even a child with multiple disabilities
can respond to love and be trained.
The afternoon included concurrent sessions ranging from Inclusive Education, to
literacy for children with multiple disabilities, to self-advocacy, etc.
The evening featured children with multiple disabilities and visual impairment
entertaining the audience with a cultural program. The program also included tribal
dances, patriotic displays and bollywood numbers.
The second day, April 06, began in the morning with presentations about inclusion of
multi-disabled children from infancy to adulthood, early intervention, early childhood
education, etc. Other presentations included: legislation as the means for
transforming lives of persons with disabilities; the importance of advocacy,
legislation and technology in empowerment.
In the afternoon, concurrent sessions dealt with transition, importance of play,
networking, etc. There also was a unique rapid-fire session where 13 speakers were
given 4-minutes to speak on a range of topics, including inclusive chess, role of
parents, adaptive physical education, etc.
The participants were given the opportunity to visit the Ghandi Ashram before
attending the Gala Dinner at the Cama Hotel. During the Gala, the Sense Jagdish
Patel Award for outstanding work in the field of deafblindness was conferred to the
Helen Keller Institute (Mumbai) and Clark School (Chennai). These two institutions
have trained over 500 teachers for the deafblind. Several special awards were also
presented. Other individuals were congratulated for special contributions to people
with disabilities.
The last day, April 7, featured a panel discussion on what makes inclusion work and
one about finding common grounds for inclusive development. Dialogue took place
discussing the role of the government and international NGO’s in developing
services through networks.
The final session was the Resolution Session. The Resolutions, called the
Ahmedabad Declaration, were presented to the Chief Guest Mrs. Sangita Singh,
Principal Secretary, Primary Education, Government of Gujarat State.
The organizers thanked the Conference sponsors – CBM (Christian Blind Mission),
National Trust , Perkins School for the Blind, Stichting Shared Vision and UKaid - for
without which the Conference would not have been such a success.
Further details about the conference can be found on the webpage of the Blind
People’s Association (http://www.bpaindia.org/Newsletter.htm) and on the
conference website (www.icevidbiasia.org) where a photo gallery is available along
with the list of conference attendees and responses from some of the participants.
Note: Article is an abbreviated version from the BPA Newsletter.

Linguistic development in people with congenital deafblindness

Assessing potentials for learning during interaction

From the onset of birth the child interacts with the world around him. He begins to
communicate through interpreting the people around him; verifying the suitability of
his activities and behaviour. Through selecting those most effective communication
strategies by imitating the successful interactions, he develops his communication
gradually until it becomes a language.
People have a communicative behaviour which understands perfectly that those with
whom there is an intention to communicate have similar abilities to receive stimuli
and share with us the same mental representation of reality. When individuals do not
have these equal possibilities to receive stimuli, because they have serious
limitations in their sense of hearing and sight, they do not respond in the expected
communicative manner and this causes a situation that blocks communication.
People who are born deafblind or become deafblind just after birth have great
difficulty beginning the communication process. The fact of not knowing who is close
by or what is happening around them results in a general lack of interest for
interacting with people. Consequently their emotional expressions are not clearly
understood by others around them. This is because these expressions are the result
of their own personal tactile perception instead of being interpreted by their
intervenor (also known as a Communicator Guide etc). If there is no intervention, the
communication process will not begin, which interferes with language development.
In order to make the communication development process happen in people with
congenital deafblindness, it is necessary to have competent interlocutors or
intervenors. These individuals are able to, through the observation of an action by
the deafblind person within a specific context, interpret the action’s meaning. The
consequence is that the interlocutor can offer an easily understood and coherent
response, according to what the deafblind person expects. The person with
deafblindness will feel, because of this intervention, that his action has meaning and
is shared by his interlocutor. This shared meaning will encourage the individual to
use the same action in future situations when he wishes the same reaction. The
success of his action and corresponding response will encourage new
communication interactions which will be repeated.
Building shared meanings is a key aspect in the process of communication
development and this becomes especially difficult when one of the two participants
in an interaction is a person with deafblindness. This is due to the fact that deafblind
people’s experience of perception is closely linked to proximal tactile stimuli, which
makes it very different to the one held by the interlocutor who can see and hear and
relies on distal stimuli.
The mental ‘track’ or representation from these two different perceptive experiences
will obviously be very different for each person. For this reason, the symbolic
elements used by interlocutors to express this experience will also be different.
This shared experience and the context in which the interaction is produced,
requires a negotiation of meaning. Only an experienced interlocutor will be able to
understand the actions of the person with congenital deafblindness. The interlocutor
will be able to give the deafblind person an encouraging answer that will form the
basis for further improvement of their communication.
From this previous discussion, we can make a number of statements:
• The process for persons with deafblindness developing communication and
acquiring language happens the same way as those seeing and hearing individuals.
This occurs as the result of numerous social interaction experiences occurring in
different situations.
• It is impossible for adequate development of communication and language
acquisition to take place in the person with congenital deafblindness without
intervention.
• The person with deafblindness needs ‘special’ expert interlocutors to provide
this intervention. These interlocutors or intervenors are necessary to interpret
situations to the deafblind person to satisfy their perceptual understanding. This
process largely involves using tactile communication to interpret the actions and
expressions that the person with deafblindness can understand.

Intervention with people with congenital deafblindness: The educational process.

A meaningful constructive educational learning process is key to the development of
people with congenital deafblindness. In order to make this process happen, we
need people to intervene with these individuals by interpreting the environment,
acting as a model, helping to orient them in their particular situation and encouraging
them to play an active role in their own learning.
The main difficulty that people with congenital deafblindness have is being aware of
what is happening around them. They need to learn both how they can be
understood by others and how others can understand them. This difficult situation
severely weakens their interest in interaction thus limiting their ability to
communicate and acquire language. Intervention offers a way to overcome this
difficulty.
Good cognition, demonstrated through awareness, perception, reasoning and
judgement is a necessary requirement for adapting to ones’ environment and key to
communication and linguistic development.

The main goal of intervention for people with congenital deafblindness is to develop
their cognitive potential to allow them to live fulfilling lives within a family context and
society as a whole. It should be understood that critical to achieving this potential is
the development of communication; acquiring language preferably in the person’s
mother tongue.

This goal can be achieved in four ways:

• Developing a broader awareness of the world (including people, animals,

plants, the environment, various activities, etc)
• Providing varied interaction situations that facilitate the acquisition of learning.
• Motivating the communication development process by offering coherent
responses to each action, interpreting expressions, regardless if they are actions or
not.
• Promoting the development and acquisition of language by offering a linguistic
model that, adjusted to the deafblind person’s perceptive system, will allow him to
communicate in the society in which he lives.

1. Developing a broader awareness of the world

A human being has basically two ways of interacting and knowing his environment.
One way involves the direct contact with environmental stimuli; the other involves
interactions with others through shared experiences.
If one of two people who are interacting has more cognitive, communicative and
linguistic competence than the other and guides the interaction with the objective of
building learning, we say that this learning experience has been mediated.
People who are deafblind need to know the world around them through shared
experiences gained through mediated learning.
People with congenital deafblindness lack appropriate sensory modalities seriously
interfering with acquiring information and learning. Therefore these individuals
require mediated learning through using intervenors to facilitate their understanding
by interpreting the environment around them.
The success of this mediated learning is dependent on the intervenor being able to:
• Actively involve the person with deafblindess such to attract his interest.
• Help the person with deafblindness learn to react to unexpected events. This
process should mean that the intervenor needs to understand the meaning that the
deafblind person gains from each experience.
• Achieve reciprocity in the interaction; that is to say, achieve a response from
the person with deafblindness to each of the intervenors proposals, while at the
same time the intervenor responds to each of the actions of the deafblind person.
• Make the learning successful and meaningful. For this the intervenor needs to
make clear what he wants the person with deafblindness to learn.
• Ensure that the total experience is meaningful.

These experiences have to be well planned to help the person with deafblindness
build his knowledge.

2. Providing varied interaction situations. The first level of intervention

It is not easy for intervenors to readily adapt their knowledge interactively with
people who are deafblind. For them it is difficult to identify and immediately react to
responses or communications that the person with deafblindness presents. It may
be difficult for the intervenor to recognize whether these interactions are functional
and meaningful.
A non-recognition response from the intervenor to actions of people with
deafblindness will quickly reduce the quality of the communication interaction, which
will inevitably lead to negative and unwanted results.
It is essential therefore that the intervenor or interlocutor care about the quality of
their interaction. They must adapt their interactive and communicative conduct to the
response or behaviour of the person with deafblindness at every moment to ensure
that the person always feels he is being attended to and understood.
One way of doing this is for the intervenor to imitate what the person who is
deafblind is doing. The person who is deafblind might then be able to notice how his
behaviour can affect his interlocutor’s behaviour or response. We can get him to
repeat the process and imitate at the same time when he feels he is being imitated.
This should create a pathway, taking similar turns, i.e. be imitated – imitate – be
imitated (listen, answer, listen). This behaviour shows that the deafblind person has
perceived, although in a different way, some meaning in his interlocutor’s action.
This introduces a synchrony in the interaction.
This regulation of interaction by both individuals (you do – I do – you do) is a
prerequisite for the development of a good relationship of trust for the person who is
deafblind. This should facilitate an enhanced contact with the world around them,
thus optimizing the learning processes.

The main objective in this first level of intervention is ensuring that the person with
deafblindness successfully participates in the interaction.

3. Motivating the communication development process- the second level of

intervention
You might say there is successful communication when: a) a person offers a specific
response to another person’s specific behaviour; b) a person’s particular behaviour
seems to imply a certain intentionality, anticipating an appropriate response, or c)
there is a level of reciprocity of behaviour between two people, leading to the
beginning of a dialogue.
Once the person with congenital deafblindness has discovered things and people
around him which have attracted his interest, has realised he can be listened to and
receive appropriate answers through interaction - he will try to communicate.
However, he will only start communication when he feels accepted and trusts that
his message will receive attention.
First, he will do this according to the mental trace that the perception of the stimuli
has left with him. He will bodily express the thing he felt, where he felt it; then wait to
be understood for the event to take place again. This moment represents a
communicative interaction.
Offering an appropriate response to the beginning of a communication action is
essential to ensuring that the communication starts and develops. This development
of communication will be reduced if we do not find a way of introducing a more
elaborate process. In short, we need to develop a proper language which gives
relevant information about everything that attracts the person’s interest, such that it
can be received, understood and imitated. This will allow him to become an active
participant in this conversational dialogue.
This reflection makes us think about the most important and, at the same time, the
most difficult question to which professionals must give an answer: is it possible for
people with congenital deafblindness to develop language, that is to say
communicate at a linguistic level?

From our own experience working with deafblind people, the answer is a definite
YES. The degree of YES, however depends on a number of variables:

• the moment at which the intervention begins,

• the amount of interesting interactions that can be achieved
• the quality of these interactions, depending on how well communication
adjustment has taken place and the competence of the intervenors and,
• Individual characteristics of the person with deafblindness. Whether the person
has an associated deficit or not and understanding the nature of these deficits that
require special consideration

The second intervention level must have the development of communication and
shared meanings as a priority.

4. Promoting the development and acquisition of language – the third level of

intervention
Through language one can share personal experiences and regulate the joint action
that takes place in a subtle and cooperative way, categorising reality and making
deductive inferences. Language is not only a system of relating to others; it is also
used to communicate with oneself and organize thoughts, so that it also becomes a
system that makes it possible to describe reality and to create thoughts that would
otherwise be impossible to reach without this powerful means of representation.
It may be easy to question the possibility that people with congenital deafblindness,
especially those without residual vision or hearing, could communicate at a linguistic
level. But at the same time, it is important not to dismiss the possibility. Having said
this, we should recognize that the lack of appropriate communication prevents the
congenitally deafblind person from having relationships with other people, affecting
their opportunity to fully grow as a total person.
Once again we say that to develop these communication skills, the deafblind person
requires an intervenor or interlocutor to make contexts perceptively clear to them.
The deafblind person needs to receive the language clearly, be able to understand
and then imitate it. To achieve these results, the intervenor must be competent in
many aspects. This includes competence in different communication methods (oral
language, visual sign language, tactile sign language, finger spelling); being
competent in knowing how to interpret meanings, and understanding how a person
who cannot see nor hear, perceives the world. This requires good training!
With respect to the use of tactile signs, tactile communication is always through sign
language where the hands of the person with deafblindness must be on the hands of
his interlocutor to be able to receive the messages. This process is reversed when
the interlocutor expresses himself and/or expects to be listened to, i.e. the hands of
the deafblind person are on the hands of the intervenor. The fingerspelling system
may be introduced depending on the person’s circumstances.
Oral language should accompany tactile sign language, whether or not the individual
has residual hearing. The sign language should be considered an essential
communicative support, until the person with congenital deafblindness becomes
communicatively competent in that language.
The use of a signed language for the person with congenital deafblindness begins
as a basic receptive communication accessible through touch. It should develop
further at an expressive level through continuous imitation. The person will become
ever so communicative.
A question is at what time, by what means and how much, should language be
exposed to the person with congenital deafblindness to ensure that he is able to
express himself linguistically?
Jerome Bruner proposes that one can only become fluent in a language when using
it as a primary means of communication. Is it necessary to have already acquired
some language in order to be able to acquire language further as an observer.
(Brunner 1990)
Paying attention to this idea, the exposure of the person with congenital
deafblindness to language in our intervention model is developed as follows:
• It starts with the first contact with the person with deafblindness.
• It is a continuous process that takes place with every single interaction
(whether the interaction is natural or caused) always searching for the most
adequate form. We try to ensure that the exposure to language is as similar in
duration to that which the person who can see and hear would have as is possible.
• It takes place with signed communication that is adapted to the age, level of
functioning and perceptual abilities of the deafblind person.

It is essential to consider that there is a large discrepancy between the cognitive

ability and the ability of linguistic expression in many people with congenital
deafblindness. The task and responsibility for professionals is to find a way to
reduce this discrepancy as much as possible.
Pilar Gómez Viñas
ONCE Unidad Técnica de Sordoceguera
Madrid, Spain
Email: [email protected]

Living with deafblindness:

a better alternative?
A focus group of deafblind people from Kalorama Foundation1 in the Netherlands
discuss adjusting to life with the loss of their primary senses

In January this year, deafblind twins from Belgium consciously chose to end their
lives through euthanasia. The two 45 year old men were born deaf and became
progressively blind. Their greatest fear was to live longer without the care of their
elderly parents; they certainly didn’t want to live on, totally dependent on their sense
of touch. The parents and their brother wilfully supported the twins decision. There
were mixed reactions in the international press. The Dutch press expressed general
understanding of their position: if you are both deaf and blind, well yes, life might be
too complex to be worth living. The other extreme could be found in the reactions of
two American organisations, the National Association of the Deaf (NAD)2, and the
American Association of the Deaf-Blind (AADB)3, as can be seen in their statement
about their ‘grave concerns that the Belgian government has failed to provide
meaningful support in life for its citizens, particularly those who are deaf and
becoming blind.’
On hearing the news, the consternation amongst deafblind clients and their
caregivers at the Kalorama Foundation in the Netherlands was extreme. While there
was sympathy with the twins’ decision to end their own lives, there was much
concern for the loneliness and the powerlessness that spurred their decision. Both
the Netherlands and neighbouring Belgium have similar and strict euthanasia
legislation. Everyone in these countries understands that, to be actively helped with
a self-chosen death, these twins must have been extremely convinced of their
course of action. Even knowing this, it prompted one of our colleagues to say what
we were probably all feeling, ‘Oh, if only I could have talked to them and got them in
touch with other deafblind people, perhaps that would have shown them that there
were other options.’ Every professional in the field of deafblindness had the same
question: what role did the twins’ professional caregivers play? As a professional
caregiver, you must of course not overstate the importance of your own role. You’re
not responsible for other people’s happiness, and you can’t create a meaningful life
for others. At the best, you can provide support. But, what is needed for this support,
what should not be overlooked?
Increasingly, short-term rehabilitation programs are seen as being the most focused
and effective form of support: the deaf person learns how to cope with progressive
loss of vision and, vice versa, a blind person learns how to cope with progressive
deafness. And, following this, the deafblind person is expected to live further alone,
long and happy! Policy makers, health care insurers and caregivers not specialised
in deafblind care and support seem satisfied with this form of care. Their
consideration seems to be: ‘surely if you can already cope with deafness, then it
should only be a matter of time before you learn to deal with your encroaching
blindness? You start accepting changes in mobility; you learn to read with the many
forms of visual aids, and you redesign your house to support you in this new phase!
And, if you’re blind and become progressively deaf, well, you adjust your forms of
communication and then you’re ready to take charge of your life under these new
circumstances! And, in cases where you still have difficulties, what should you do?
Well, perhaps a session with a primary care psychologist will help’. In these times of
austerity and market forces, this appears to be an attractive and logical approach.
So, we put this discussion to a focus group of six people, all of whom initially grew
up with a single sensory impairment, then in their teens or later in life were
confronted with a second sensory impairment. They all were aged between 32 and
56, either living alone or with partner. What follows is what they think and what
they’ve experienced.
The group met once weekly at Kalorama. While they were also very shocked at the
twins’ choice of euthanasia, they recognized the despair that could lead to a
decision like that. Will, who has recently joined this group, is deaf and becoming
progressively blind. He’s convinced that, if it were entirely up to him, he would no
longer bother getting out of bed! He feels that now, with the help of peers, he can
more easily let go of the stress and the eternal worry about what’s going to happen;
what’s my future going to be like. Deafblind peers help him to create awareness of
deafblindness to others who are not similarly afflicted. They also help him see the
humour in some situations; for example to develop the courage to, in the midst of a
tour group, to ask ‘could someone help me find the WC?’
When he was still young, Gerard saw how his deafblind uncle lived his life, and
began, early on, to learn the skills he’d need later on in his own life. He understands
that not everyone can follow this path. His social world is also limited, but the weekly
group meetings help. However he still experiences situations where he’d just like to
‘throw in the towel’. For example, at a party because of the noise he couldn’t talk to
anyone directly; he didn’t know exactly where he was and where he had to go to;
despite this, no one reacted to him. This case affected him so much that he simply
went home, feeling powerless.
Annette is the only one of the group who was born deaf. She thinks that the other
group members are more advantaged, as their speech is intelligible to others. She’s
always been dependent on translation by her caregivers; she can’t ‘read’ speech,
she can’t read anything written. Most of her contacts are computer enabled. She
enjoys chatting, discussing sports, cooking and other subjects with other deafblind
peers.
Mieke calls the group ‘my people’. She feels that if you have to do everything by
yourself, this would mentally destroy you; ‘then I simply don’t think life would be
worth living.’ She urges family, friends and caregivers to undergo simulated
deafblind experiences - let them experience the reality of being deafblind. She
hopes that this will generate greater understanding, and that they’ll be able to better
manage their actions.
Ria notes that her blindness and her deafness are always there; they paralyse her.
She finds group participation extremely exhausting; she really has to stay focused,
and even then, has difficulties understanding. She feels safe in this group, as she
can talk with others. Elsewhere, she always feels on edge.
Anneke agrees completely: contact with peers and specialised caregivers provide
her a feeling of safety. She mentions the difficulties of communicating with her
General Practitioner as an example: in his practice, quite a long way from the waiting
room, he calls to his patients when it’s their turn! If she then asks where he is, he
answers, ‘here.’ She then responds: ‘how can I know where you are?’ Even after
discussing this together, he continues to do this!
Everyone familiar with deafblindness will recognize these shared experiences.
Social participation and personal autonomy are especially endangered. These
deafblind individuals illustrate that deafblindness requires from them a continuous,
lifelong awareness and ability to adapt. Obstacles and problems can pop up
everywhere and every time. Again and again, the deafblind person has to act or
react. To survive these exhausting challenges, short term rehabilitation is necessary;
but over the long term, regular contact and support from deafblind peers and
specialised professionals - people who understand what we experience - is crucial.
Despite all this, it’s a shame that society seems to understand that, due to the
severity of living with deafblindness, people can choose to end their lives, whilst
seemingly not being aware how much can be done by society to support deafblind
individuals to lead safe and enjoyable lives.
Focusgroup Deafblindness Kalorama

Correspondant:
Lieve Roets-Merken,
Psychologist and Researcher
(email: [email protected])
Kalorama Foundation
(www.kalorama.nl)

10th Helen Keller World Conference and the 4th WFDB General
Assembly
The 10th Helen Keller World Conference and 4th WFDB General Assembly will be
held at the Hotel Taal Vista1,Tagaytay (60 km outside Manila), Philippines,
November 6-11 2013, hosted by the Philippines National Council on Disability Affairs
(NCDA)
Conference theme
Accessibility and inclusion for people with deafblindness in everyday life –
CRPD for everyone everywhere.
Program
A future announcement will contain further information about the
conference program.

Conference fees before August 01, 2013:

The conference fees for the whole conference will be:
-
300 Euros per person for deafblind persons, family members, interpreters/assistants
from developing countries;
-
350 Euros per person for conference participants, interpreters/assistants from highly
developed (industrial) countries.

After August 01, the registration fees will increase by 50 Euros per person.
The fee will include welcome reception (Nov 6), conference gala dinner (Nov 11),
5 days of lunches, coffee/tea breaks, mineral water and conference material.
Fees do not include transport to the conference, excursions, airport transfer,
other dinners, visa, vaccination or other personal expenses.
The cost for day guest participation is 30 Euros, which includes lunch, coffee/tea
breaks and water. Individual
cost for welcome reception and gala dinner is 25 Euros.
For further details about registration for the conference, contact Christer Nilsson at
[email protected] or refer to the WFDB website: www.wfdb.org. Hotel booking can
be done directly by contacting [email protected]

Sense International: Influencing global change and local lives

Kate Mairs and Lucy Drescher

Email: [email protected]

[email protected]

Putting deafblindness and disability issues on the international agenda isn’t easy. In
developing countries where – understandably – there is an emphasis on ensuring
that the most basic needs are met, it is even more challenging. But disabled people
must not be overlooked, and campaigning to get their voices heard has never been
more important. People living in poverty are already at a significant disadvantage,
but add in a disability, and the challenges they face become all the more difficult.
In 2000 the United Nations (UN) agreed on the Millennium Development Goals
(MDGs), which aim to tackle poverty around the world. But there was no mention of
disability, despite 15 per cent of the global population being disabled. The MDGs
expire in 2015 – and Sense International (SI), the sister charity of Sense, along with
a coalition of organisations are working to ensure that disability is included in the
next set of targets.
Sense International was established in 1994 to support the development of services
for deafblind people in some of the poorest parts of the world. Today the
organisation works in seven countries – Bangladesh, India, Kenya, Peru, Romania,
Tanzania and Uganda. Over the years SI has had a range of significant
campaigning successes. For example we have:
• Worked with governments to provide specialist healthcare and education
services for deafblind people.
• Raised awareness of deafblindness – from grassroots organisations to
international bodies.
• Achieved legal recognition of deafblindness in four of the seven countries we
work in.
This gives a snapshot of the work that has been done and there is much more to do.

Making the case

Zamir Dhale, who is deafblind and Senior Advocacy Officer for Sense International
in India, recently presented at the Human Rights Council on deafblind /disability
issues at the UN in Vienna. As well making a speech, Zamir also met with
representatives from Australia, Turkey, Sweden and New Zealand. He was able to
raise awareness of SI India’s work and the challenges faced by all deafblind people.
He highlighted the lack of identification of deafblind people in developing countries,
the complexity of their particular needs and the inaction by many governments in
making adequate provision for their deafblind citizens.
From its UK head office, SI also works with the Department for International
Development (DFID), which supports work undertaken by organisations like SI.
DFID does not currently have any objectives around disability, nor does it require
information about how disabled people are benefitting from the projects it funds.
In a bid to change this SI is lobbying DFID to get disability added to their agenda. An
inquiry into disability and development has been promised for late 2013/early 2014.
The findings could provide evidence that would put a greater focus on disability
issues – drawing attention to the lack of support for this marginalised group of
people in developing countries.

Campaigning at a national and local level

There is also a great deal of national and local advocacy work going on in both the
UK and the countries where Sense International works.
• At a UK level, SI is meeting with MPs and Peers to persuade them that
disability should be firmly on the new agenda. We have linked up with a member of
the UK’s House of Lords, Lord Browne of Ladyton, who is an advocate on disability
issues. Lord Browne recently gave a speech in the House of Lords which urged that
disability should be included in the post-2015 MDGs. During this he referred to SI’s
work as an example of what can be done to improve people’s livelihoods.
• In Romania, early intervention for deafblind/multi-sensory-impaired children
has been embedded in the national education system. Romania now has the
necessary framework to allow the development of the early intervention service for
all sensory impaired newborns.
• In Kenya representatives, including parents of deafblind people, have met
government officials to try to get amendments made into legislation, including
initiatives to improve education for deafblind people.
• In Tanzania, country representative, Christopher Andendekisye has made
several appearances on national television to discuss disability issues and the work
of SI. This exposure has helped to put deafblindness and Sense International on the
map – increasing awareness amongst the public and within government.
• India, Kenya, Tanzania and Uganda are also working to get important funding
from GAVI, the global alliance on vaccination. In November 2011 GAVI made the
decision to support the Rubella vaccine. Congenital Rubella syndrome affects
approximately 20,000 people in East Africa and India. Country offices are lobbying
their governments to put in applications to GAVI for funding of this programme.
• SI Kenya is working with the Kenyan Institute of Research to establish a
research project into the prevalence of Rubella. Without evidence it is unlikely that
the government will put in an application – they require proof that a significant
number of people are affected by Rubella, and that there is an understanding of how
the vaccination programme could be implemented.
• In Latin America, at the end of 2012, Peru was one of the first countries to
introduce legislation that falls in-line with the UN Convention of the Rights of
Persons with Disabilities. The law ensures that people with disabilities:
- are included in society
- get an inclusive education
- are appropriately represented in government
- - are able to access public transport.

For further information about campaigning and advocacy work in Peru, please see
the article ‘Campaigning successes in Peru.’
Sense International – campaigning successes in Peru
By Ricardo Zevallos Arévalo

Peru Director, Sense International

Email: [email protected]

“There is progress in the production and adoption of standards for deafblind people,
but implementation remains a challenge.”
Deafblindness is a low incidence disability affecting an unknown number of
Peruvians. Deafblindness has an impact on communication and access to
information – leading to social isolation, segregation and exclusion. There are no
statistical records of deafblindness in Peru which makes it difficult to set services for
prevention, care and rehabilitation.
After a concerted effort by civil society, led by Sense International on May 2, 2010,
the Law No. 29524 which recognises deafblindness as unique disability and makes
provisions for the care of people with deafblindness was passed. The law highlights
the need to implement the interpretation guide service to meet the communication
needs of deafblind people. Subsequently, on June 16, 2011, the regulations of the
law by Supreme Decree No. 006-2011-MIMDES were approved. The regulation sets
up an interpretation guide service in all government institutions. It states that the
Ministry of Education approves requirements, profiles and the accreditation process
for guide interpreters; that the National Council for the Integration of Persons with
Disabilities (CONADIS) promotes awareness of the regulation within schools, audits
the compliance with the regulations and creates the Special Register of Guide
Interpreters; that public institutions provide interpretation guide service from July 1,
2011 and private institutions from January 1, 2012.
The work done since the formal recognition of deafblindness was brought in has
positively influenced the actions of government institutions, which have begun to
bring about changes that allow the inclusion of the needs of deafblind people in
plans, programmes, actions and activities.
The education sector has been working on an inclusive approach. Students with
mild and moderate disabilities should be included in mainstream schools, and
special schools should provide a quality educational service to students with severe
disabilities and multiple disabilities. Deafblind students are considered students with
severe disabilities. Progress has been made in preparing the guide interpreter profile
and requirements and in the validation of alternative communication systems for
deafblind people (already approved by the sector). There is a teacher training
programme in deafblindness and a Guide for the Care of Students with
Deafblindness that has been developed by the education sector with technical
support from Sense International.
The health sector has been implementing a national strategy of universal health
insurance, offering various affiliate schemes to Peruvian citizens. The National
Immunization Strategy has been in place for decades, with technical support from
the Pan American Health Organization. Thanks to them, during the 2000s Rubella
and Congenital Rubella syndrome (Rubella causes CRS) were eliminated; both one
of the root causes of congenital deafblindness. However, there is not a good
detection and certification system for deafblindness – health centres do not have a
treatment protocol for patients with deafblindness and rehabilitation processes do
not include them. With Sense International support technical documents were put
together, including a Toolbox on Community-Based Rehabilitation and Toolbox on
Physical Rehabilitation. There are Community-Based Rehabilitation programmes in
Arequipa and Cuzco that can act as models of inspiration for the health sector.
The labour sector has been promoting various programmes that allow youth training
and placement, promotion of corporate social responsibility, training and retraining of
adults who are unemployed, or at risk, and temporary employment among members
of marginalised and rural communities and districts in the country. Most of the
programmes have incorporated a participation quota of people with disabilities. The
characteristics of deafblind people needs to be analysed separately, in order to be
able to design and implement programmes tailored to their requirements and needs
and to provide reasonable adjustments for their inclusion.
The women and vulnerable people sector, through CONADIS, has been developing
various actions that allow the development of a statistical method of measuring the
number of disabled people benefitting from programmes – this has been validated in
the Tumbes region, to be available for future government interventions. The “I’m
Able” Programme features people with disabilities as subjects, who are suitable for
entry into the labour market; and there a Budget Programme that can focus its
attention on the development of interventions in the areas of education, health and
labour. In terms of support for deafblindness, thanks to initiatives provided by Sense
International, a deafblind person was hired as a deafblindness specialist at
CONADIS headquarters, and a group of young people with deafblindness took part
in a bakery and pastry workshop in a government-funded Technical and Productive
Education Centre - CETPRO. The new law on the rights of people with disabilities,
passed in December 2012, creates new challenges in terms of legal capacity,
accessibility, educational care, community rehabilitation, non-contributory pension
schemes, participation in social programmes etc. and how deafblindness can be
included. Sense International has been invited to make comments and suggestions
on plans for the regulations to go along with this new law.
The Peruvian Government has to understand the importance of the interpreter guide
as a positive way to ensure the social inclusion of deafblind people in all areas of
life.
The developments described are generating exciting, deep structural changes that
create in-turn, new challenges. Gradually practices, policies and inclusive
commitments of all relevant actors can allow people with deafblindness to have a
future of participation and opportunities in Peru.
Early intervention in Romania – it’s official!

In 2007, Sense International (Romania) – SI(R) along with several parents, family
members, education specialists and medical professionals, identified the need to
address a major problem – how to ensure early intervention services for babies
(those up to three years old) born with visual and/or hearing impairments, so that by
the time they reach kindergarten/school age, the chances for them to reach their full
potential and become active members of society are dramatically improved.
Although early identification and early intervention services are important in all types
of disabilities, in the case of deafblindness, they are crucial.
This is why, six years ago, SI(R) took its first steps towards developing an early
intervention project that would significantly improve the quality of life for deafblind
and multisensory impaired children in Romania. There are three major cities where
SI(R) is currently supporting the early identification and provision of early
intervention services for small multisensory impaired / deafblind babies: Bucharest
(since 2007), Oradea (since 2008) and Timisoara (since 2009)
This project is implemented in partnership with local maternity units, kindergartens,
schools, school inspectorates and child protection departments. In practical terms,
this programme means the hearing screening of almost 47,000 babies (in 5
maternity units), the visual testing of over 8,400 babies, the provision of early
intervention services to almost 100 babies in 3 Early Intervention Support Centres,
carried out by 3 multidisciplinary teams consisting of 12 medical specialists and 12
early intervention workers. It also means the active involvement of parents and
family members and the development of a Curriculum for Early Intervention.
The results and achievements of this project and SI(R) lobby and advocacy efforts
led to the approval of Law no. 3071/18.01.2013 regarding the Ante-preschool Early
Intervention Curriculum for Deafblind/Multisensory Impaired Children, which was
published in the Official Gazette of Romania, part I no. 146, BIS on March 19, 2013.
This is an extraordinary achievement for Sense International (Romania). It is thanks
to their efforts that Romania now has the necessary legal framework allowing the
development of early intervention services for sensory impaired newborn babies.
The authors of this reference document in the field of deafblindness are: Gabriela
Maria Jianu -psychologist, Eva Magdalena Oprea - special education teacher and
Carolina Ana Biro - psychologist. Special contributions were made by consultants:
Andrea Hathazi - University lecturer, Ph.D., Mihaela Adriana Moldovan - special
education teacher, Ph.D. and Stela Rodica Todea - physiotherapist.
This document is crucially important for the development of deafblind/MSI children
and it would not have been possible without the valuable support received from Mrs.
Liana Mitran, General Inspector for Special Education within the Ministry of National
Education.
Perhaps the last word is best left to a mother, whose son, Mihai, benefitted from
early intervention services in Timisoara:
“It is my strong belief that the early intervention programme changed Mihai’s life.
Unlike any other types of therapy he went through, early intervention happened
smoothly, without him feeling any pressure to do anything, but rather to do
everything by playing.
Early intervention works wonders. When you think there are so many other kids in
need of early intervention who could benefit a lot from stimulation at an early age....
They need to be supported, the same way Mihai was.”

Argentina

Services Currently Available in the Province

of Córdoba, Argentina
For People with Multiple Disabilities (2011)

Authors: Agüero Rita Valeria, Bartoletti María Soledad, Casanova Gisella Soledad,
Cepeda Mariela Soledad, Chiaraviglio Maira Magalí, Lodeyro Pamela
Collaborator: Montenegro Gisel; Adviser: Ferioli Graciela
Interdisciplinary Researchers/Final work: Abascal Miriam, Bossio María Teresa,
Pisano, Magdalena.

Introduction
Based on the experience we acquired during our internships and the reading
material we had access to, it came to our attention that among people with
disabilities in Cordoba Province, a number of them have multiple impairments. It was
therefore important to carry out a study to identify these people, analyze their
educational needs, and determine what kind of education they are receiving within
the inclusive education guidelines.

Methods
This led us to our main research subject: What types of educational and social
services provided by the institutions in the Province of Cordoba, Argentina are in
contact with people with multiple disabilities. Our objectives were to identify what
services are offered by these institutions that work with people with multiple
disabilities; learn about the main obstacles these organizations face, and find out
about educational background of the professionals that work with this specific
population. The collected information was analyzed through standard statistical
methods.

Results
Based on the survey results, 78% of the 128 institutions surveyed in the Province of
Cordoba provide services to people with multiple disabilities. Regarding the financial
support that these institutions receive, we can confirm that the government is
actively involved in this service.
It was noted in the study that the services of the State Special Education Program is
addressing the special service needs of children and youth aged 0 to 21 years of
age with multiple disabilities who attend the school system. The program covers a
range of services, from early identification and intervention through to high school
levels.
Based on the representative sample of these individuals, 59% attend public funded
schools, 25% are in schools which receive specialized educational support through
a combination of government and private donors, while 16% attend totally privately
funded schools. Only 1% of the surveyed institutions confirm having special
residences for these individuals.

Types of Multiple Disabilities

The research examined the array of disabilities that were observed among those
identified as multiply disabled. The individuals identified with multiple impairments
were then organized into three broad groupings, based on what was considered as
their primary impairment: Visual Impairment, Hearing Impairment and Motor
Impairment. They were then further categorized as to their additional disability.
Figures 1, 2 and 3 indicate the percentages of the various disabilities associated
with the primary impairment - visual, hearing and motor impairment, respectively.
Without going into a detailed analysis for this paper, the authors wish to observe that
the most noticeable multiple disability inter-relationship was that identified in Figure
3. For those individuals identified in the Motor Impairment Group, the primary
associated disability was cognitive impairment. The range of cognitive impairment
ranged from 58% for those with minimal to moderate impairment to 34% with
moderate to severe. While some degree of cognitive impairment was associated in
the visual and hearing impaired groupings, none were observed to the same degree
as with the motor impairment group.

Qualifications of Staff
The study examined the qualifications and specific training of the professional staff
working with the different groups of individuals with multiple disabilities.
This examination determined that while most of the professionals are very well
educated through courses, seminars and conferences and even University, very few
have received specialized training (i.e. post graduate education) in multiple
disabilities.
Figure 4 (see next page), summarizes the academic background of the
professionals working with this disabled population. Training levels ranged from:
55% having ‘related’ educational background (i.e. training in special education), 25%
‘somehow related’ background, (i.e. practical experience, courses, seminars,
conferences, self-study), 13% ‘specifically related’ (i.e. post graduate education in
multiple disabilities), while 7% did not have any related training at all.
This low (13%) overall proportion of staff having the appropriate qualifications to
work with this population is concerning. While some practical experience combined
with various short courses is important for staff, it does not replace the importance of
staff possessing the strong theoretical knowledge which is usually gained through
specialized education in the field of multiple disabilities.
When developing action plans and priorities to meet the needs of persons with
multiple disabilities and their families, it is essential that professionals have the
appropriate knowledge to develop these programs.

Conclusion
This study was undertaken to describe the current level of services available for
persons with multiple disabilities in Cordoba Province. Part of the study also
included: describing general makeup of that population as well as investigating the
qualifications of the professionals and care givers who work with this population.
A better understanding of the complexity of this growing population will assist in
determining the type of services that this population requires. Furthermore, the
results will also permit the development of action plans and priorities to further the
development of better services for these individuals.
One immediate observation from the study was the determination that there are an
inadequate number of professionals available with appropriate academic
qualifications to work with these individuals with multiple disabilities. It is
recommended that additional professional training programs, such as specialized
courses, postgraduate studies programs, seminars, etc. be made available to
improve the knowledge of all staff working with individuals with these multiple
disabilities.

For more information about this study, contact Mrs Claudia Amusategui,
Director of Instituto Cabred Email:
direcció[email protected]

Australia

Jeraldine Milroy (Australian Deafblind Council–

www.deafblind.org.au) reports:

The Australian Deafblind Council is experiencing a period of evolution as Disability

Rights and Policy in Australia start to blossom. In keeping with international
standards and in recognition that Deafblindness is not the addition of two discrete
disabilities, we have changed our acronym from ADBC to ADbC to reflect the
Australian Deafblind Council rather than the Australian DeafBlind Council.
Alisa Wills (former Administration Officer) has moved from the ADbC into other
areas of the disability sector where she continues to ‘shine the torch of advocacy’. I
have since taken on Alisa’s role with the ADbC, my name is Jeraldine or “Jeree”. My
background is a Physiologist with a research interest in the perception of haptic
communication.
Celestine Hare has retired as the CEO of Able Australia and Secretariat of the
ADbC. With grace and strength Celestine shaped the Deafblind Association into
Able Australia, creating a strong foundation to support Australians who are
Deafblind. Able Australia is now has the honour of being led by Scott Sheppard,
well-known respected in the disability sector. He was recently awarded the Disability
Professionals Victoria Fellowship.
While Dr Mike Steer has retired from his position as a professional committee
member of the ADbC (and a previous organizer of this report), his contribution and
dedication to raising awareness of Deafblindess continues to inspire.
The ADbC has been involved in writing submissions on Disability Employment, Draft
Rules for the National Disability Insurance Scheme and a submission to the National
Accreditation Authority for Translators and Interpreters (NAATI) recommending
specific accreditation and training for Deafblind Interpreters. Full versions of these
submissions can be viewed at www.deafblind.org.au/reports.asp

Australian National Deafblind Conference Sydney 2014

The Australian National Deafblind Conference convened by Forsight Australia has
been postponed until 6th-8th June 2014. For conference updates, please refer to
Forsight Australia’s website:
www.forsightfoundation.org.au/conference/conference.html

Convention on the Rights of Persons with Disability

In 2013 the UN Committee on the Rights of Persons with Disabilities began dialogue
with Australia in regard to its compliance with Convention on the Rights of Persons
with Disability (CRPD) obligations. In April two Australian representatives from the
Shadow Report Project Group went to Geneva to attend the ninth session of the UN
committee to lobby for key recommendations contained in the Shadow Report.
During the ninth session, the UN Committee developed a list of issues emerging
from Australia’s baseline report. Australia will appear at the tenth session of the
committee in September. While 2013 is the year for Australia’s first hearing at the
UN on the CRPD, it will not be long before Australia is due to do its second report.
The shadow report as well as the list of issues that the UN Committee has asked
Australia to respond to can be found at disabilityrightsnow.org.au

Visit by William Green

We were delighted to have the opportunity to have William Green, the immediate
Past President of Deafblind International visit us while on his vising fellowship with
Senses. He ventured to Victoria to attend 13th National Deafblind Camp, and visited
Able Australia for a couple of days where he conducted a very dynamic workshop.

Deafblind Victorians meet Prime Minister Julia Gillard

Deafblind Victorians, formerly known as Deaf Blind Advocacy Group Committee, met
personally with Julia Gillard Prime Minister of Australia and Jenny Macklin MP
Minister for Families, Community Services and Indigenous Affairs and Minister for
Disability Reform at the Community Cabinet meeting held at Norwood Secondary
College on Wednesday, 17th April 2013.
It was an exciting day for the Deafblind Victorians (Trudy Ryall, Heather Lawson and
Michelle Stephens) who met personally, for half an hour, with Julia Gillard and Jenny
Macklin at a 40th Community Cabinet Meeting in Melbourne. The three ladies made
very passionate presentations about their personal conditions, while stressing the
need for ongoing support and services for people with disabilities like themselves.
To access the text of their wonderful presentations, contact Jeraldine Milroy at:
[email protected].
Heather Lawson raised at the forum the issue of closing Auslan courses and the
reduction of trained interpreters for Deafblind community. They all talked about the
barriers the Deafblind community face today and self-advocacy for the Deafblind
community. Trudy Ryall presented to them a DVD that was made with the Self
Advocacy Resource Unit (SARU), Jodee Mundy and the Deafblind Victorians - a
reflection on our lives and what it is like to be Deafblind.
Julia Gillard and Jenny Macklin received a Deafblind t-shirt each and were
encouraged to practice their finger spelling printed on the back of the t-shirt.

William Green visits Senses Foundation in

Western Australia

Senses Foundation was delighted to host William Green, immediate past President
of DbI, as a Visiting Fellow for the three months from February to May 2013.
William’s many years of experience working internationally in the field of
deafblindness, most recently as Senior Consultant with Lega del Filo d’Oro in
Osimo, Italy, an organisation with over 50 years’ experience in the provision of
services and research in deafblindness, was welcomed. A busy schedule of master
classes, workshops, meetings and client consultations was organised.
William’s trip was also timely, enabling him to contribute to a review of Senses
Foundation’s Deafblind Services, assisting with long-term planning around staff
roles, training needs and the delivery of services.
William was able to offer advice and guidance as he met with management and
staff, Senses Board and clients throughout all of Senses Foundation’s services

Meeting Linda
Linda, who is deafblind, comes into the office fortnightly as a volunteer for Senses
and she met William on a couple of occasions. Linda shares her “William
experience”:
“I met William Green at Senses briefly. I also attended a talk he gave at Senses
about Ushers Syndrome which I really enjoyed and learned a lot from.
William is a very dynamic, charismatic person and one feels one has known him
forever. What struck me most is the way he engages with disabled people and
doesn’t shut them out or put them down but speaks to them on their level.
He has been the President of Deafblind International and has travelled all over the
world empowering and helping deafblind people.
He has a great sense of humour and takes what deafblind people say seriously. He
is not dismissive of our opinions or views.
His views on early intervention were exciting and the fact he wanted to involve
deafblind people in having a voice was very inspiring.
Finally I found William to be a person who gets things done rather than remaining
complacent and passive in the background.”

Advocating for Senses

William lived up to his reputation as an advocate for people who are deafblind when
he met with the Director General of the Disability Services Commission, the Western
Australian government’s funding body for services for people with disability. William
highlighted the need for continued support through their funding of services to
support the needs of people who are deafblind. William also met with officers from
other funders of charitable organisations like Senses Foundation where he
encouraged them to consider the needs of people who are deafblind.

The weekends were often not a time for putting his feet up!
The Usher Support Group invited William to join them on one of their events in
March. The group met on the Swan River foreshore and found an idyllic shaded
area with protection against the hot sun. Members of the group participated in water
sport activities with William choosing to observe from the speed boat! A relaxing
afternoon with a picnic lunch followed.

Staff training
In addition to William joining staff team meetings from the various departments
throughout Senses, William attended a number of more formal training sessions
throughout the month of March. One of the training sessions was opened up to a
wider external audience and staff from the Association for the Blind WA, the School
of Special Educational Needs and audiology services welcomed the opportunity to
attend.
The National Disability Services, the organisation in Australia which supports
disability service providers, hosted a well-received sector wide seminar during which
William shared his expertise with others in the disability sector.

March was also a busy month for travel

William joined a number of Senses staff and clients attending the Deafblind Camp
2013 organised by Able Australia at the Phillip Island Adventure Resort on the south
coast of Victoria.
The weekend provided an opportunity for 39 people who are deafblind to get
together for a weekend of socializing and fun. As a VIP, William was given the
responsibility for judging the Mexican themed fancy dress competition!

Rural and Remote trip to the Kimberley Region of Western Australia

Senses Foundation staff regularly travel to rural and remote parts of Western
Australia meeting with and delivering training to increase the knowledge and skills of
those working with people who are deafblind.
As part of his trip, William Green accompanied Angela Wills, Senses Foundation’s
Coordinator of Deafblind Services and travelled to the Kimberley, the northern most
region of Western Australia.
Workshops were held in Kununurra, which is over 3,000 kilometres from Perth flying
via Broome. In Broome, the largest city in the Kimberley, clients, families, and a
range of professionals including a student doctor, therapists, teachers and support
workers attended workshops to learn about deafblindness and people who are
deafblind, their needs and how to support them more effectively.
And - of course, a trip to Australia is not complete without meeting kangaroos!

Many thanks to William

All at Senses Foundation are delighted to have hosted William as a Visiting Fellow
and are busy planning to take advantage of his next sabbatical!

Angela Wills ([email protected])

Coordinator, Deafblind Services
Senses Foundation
(www.senses.asn.au)

Brazil

Grupo Brasil announces the dates and location of the 5th

International Forum
on Deafblindness and Multiple Sensory Disabilities and
associated meetings for 2013

Grupo Brasil, the National Network supporting people with deafblindness and
multiple sensory disabilities in Brasil, is announcing its 5th International Forum on
Deafblindness and Multiple Sensory Disabilities, at the Universidade Federal de São
Carlos (UFSCar), November 21-23, 2013. Grupo Brasil is a partnership of Ahimsa
(Educational Association for Multiple Disability), Abrasc (Brazilian Association of the
Deafblind) and Abrapascem (Brazilian Association of Parents and Friends of People
with Deafblindness and Multiple Sensory Disabilities).
Since 2004, Grupo Brasil has been sponsoring these forums which are designed to
foster the development of public policies and implementation of appropriate services
on behalf of families and people with deafblindness and multiple sensory disabilities.
This event received the official designated ISSN registration number 1982-2669
beginning with its 2nd Forum in 2007.
The theme of the 5th International forum this year is: Holding Hands: Assistive
Technology, Health and Education for the Inclusion of People with Deafblindness
and People with Multiple Disabilities.
Coinciding with the forum will take place the VII National Meeting of Families and
Professionals specializing in deafblindness and the VIII National Meeting of
Deafblind People.
Incidentally, the dates of this event will occur during the Brazilian National Week for
Deafblindness and the Municipal and State Day of the Person with Deafblindness.
The main objectives of the Forum are:
• Disseminate information on Deafblindness and Multiple Sensory Disability
• Present research being carried out in different states of Brazil and in other
countries
• Promote the meeting of families for empowerment and to further organize the
actions of the existing groups (Abrapascem)
• Promote the meeting of deafblind people to empower the Brazilian Association
of the Deafblind (Abrasc)
• Establish a partnership with a University to foster research and studies in the
field
• Exchange experiences among established services around Brazil
• Exchange experiences with participant countries.
This International Forum and other associated organizational meetings are held
every two years, usually in a different city in an attempt to reach all the states of this
large country with its five distinct regions. We try to have the event with the support
of an accredited University which brings more acredibility to the Forum.
As an international event, international researchers are invited to present their
studies and new accomplishments. This creates more opportunities for families,
professionals and people with deafblindness and multiple sensory disability to meet
and exchange experiences, strengthen their bonds and establish more partnerships.

1st Regional Forum on Deafblindness and

Multiple Sensory Disabilities
Educational Perspectives in State Schools

Shirley Rodrigues Maia reports on a Regional Forum organized by Ahimsa

(Educational Association for Multiple Disability) in the latter half of 2012 to assist the
State Secretary of Education in the State of São Paulo to deal with the subject of
deafblindness and multi-sensory disabilities in this large populated region of Brazil.
This Regional Forum was organized through a series of meetings at eleven
locations throughout the State. These meeting locations were selected to represent
the 94 Departments of Education that are responsible for education in the 655
municipalities within the State of São Paulo. This was indeed a huge logistical task.
These meetings were intended to disseminate information about the disability. They
were also meant to help the authorities properly identify the students (with sensory
disabilities) that were already in schools but not receiving proper education for their
disability due to the lack of knowledge about their condition and appropriate
educational needs.
Over 4000 individuals, including regular classroom teachers, special education
teachers, educational directors, University teachers, graduate students etc.,
attended these sessions from August through November 2012. Shirley Rodrigues
Maia, president of Grupo Brasil and educational director of Ahimsa, coordinated
these information meetings, assisted by other professionals from Ahimsa. Claudia
Sofia, representing Abrasc (Brazilian Association of the Deafblind), spoke about the
needs of persons with deafblindness at all of the meetings.
As a result of the knowledge gained from attending these meetings, the schools
were now able to identify their known disabled students as being multiple sensory
disabled. Some 133 students were now identified as having multiple disabilities and
45 students identified as congenitally deafblind.
Based on this discovery, the State recognized that their staff needed additional
training as well as the need to hire and train special intervenors to work with these
students in the classroom. The current policy is that students identified as having
acquired deafblindness have the right to have a guide-interpreter at school. Guide-
interpreters are properly certified in the Ministry of Education of Brazil with a clear
job description and receive appropriate salary according to this classification. This
situation does not currently exist for the intervenors who work with individuals with
congenital deafblindness and those with multiple sensory disabilities. Ahimsa is
working on this issue to ensure that intervenors are properly certified and paid
accordingly for this career throughout the State of São Paulo.
There are a huge number of people with disabilities in Brazil. Enacting the policy of
inclusion is perhaps the only way to ensure they have the opportunity to interact with
their peers and to guarantee their right to a formal education to prepare them for a
better future. We must guarantee that these students receive appropriate services to
meet their communication and educational specific needs. We do this by
disseminating information, training professionals and helping to empower families.
This is possible when we work together with the government, universities and
families focusing on actions like this one described in this paper.

Shirley Rodrigues Maia

Ahimsa/Grupo Brasil
Rua Baltazar Lisboa 212
São Paulo, Brazil
www.grupobrasil.org.br
Article translated by Vula Ikinomides (email: [email protected])

Canada

Canada’s First Resource Centre for Congenital Deafblind Individuals

opens in Paris, Ontario

The Canadian Deafblind Association Ontario Chapter (CDBA Ontario) recently

achieved a big milestone with the opening of its Resource Centre in Paris, Ontario
that is fully designed for people who are deafblind.
The new 13,380 square foot (1243 m2) Resource Centre provides CDBA Ontario
with the ability to provide new programs and services for people who are deafblind
across the province of Ontario in areas such as volunteer opportunities, music
programs, sensory experiences, respite, social and recreational activities, art
programs, and much more.
CDBA Ontario is very proud of what’s in this Resource Centre. The organization
consulted with individuals who are deafblind, families, members and other
community stakeholders to determine the contents. It took the collaboration of
countless minds to create this uniquely accessible Centre and the organization is
eternally grateful to everyone who contributed to the creation of this innovative
Resource Centre.
Contained within the walls are: a two bedroom respite apartment, Snoezelen room,
music room, boardroom, offices, tuck shop, communication lab stocked with
accessible communication technology, multi-purpose room, training classroom and a
café. The café will provide volunteer and employment opportunities for individuals
who are deafblind.
The CDBA Ontario Resource Centre is the first in the province that is uniquely
designed to meet the accessibility needs of individuals who are deafblind. It includes
features such as ceiling lifts, an adult attendant area, fire alarms with strobe lighting,
countertops designed for wheelchair access, Brailled and high contrast signs, as
well as lots of natural light and specialized lighting. The halls of the Resource Centre
are lined with uniquely textured railings. These railings provide visitors with tactile
information that indicates which section of the building they are in. Considerations
also went in to the colours used for the walls, kitchen countertops and floors and
were carefully selected to highlight transitions or to communicate other important
information.
The celebration of the Resource Centre opening began this spring with a special
open house for individuals who are deafblind. Concrete cues were developed for
specific areas in the Resource Centre. Over the course of three days, there were
activities like introductions to the Snoezelen Room and Music Room, Brailled board
games, video games, and cooking classes as well as spa treatments that preceded
a dance.
Old friendships were renewed and new friendships blossomed. These three days
were filled with a lot of joy and tears of happiness as the new Resource Centre was
brought to life! In total, approximately 50 individuals who are deafblind attended the
events, some of whom came from places in Ontario as far as 350 to 800 kilometres
away!
A few weeks later, On May 15, 2013, CDBA Ontario had its official grand opening for
the public. Many families, staff, and friends came to experience the Resource Centre
during an open house. CDBA Ontario was also warmly welcomed that day by many
people from the local community who came to greet the organization. CDBA could
not have asked for a more welcoming community to join and the organization is
grateful for the heart-warming welcome received from everyone in the town of Paris.
The day was capped off with a special gala dinner that was hosted by a local
television personality with dignitaries on hand from municipal, provincial and federal
governments as well as the board of directors, selected staff, and key supporters. It
was a great opportunity to reflect and celebrate how far CDBA Ontario has come in
20 short years.
The vision for Resource Centre goes all the way back to the early days of the
organization, when CDBA Ontario board members including Chuck Bulmer and Stan
Munroe dared to dream big about a centre designed for individuals who are
deafblind.
The dream was kept alive through the years by the board of directors. In 2008 a
CDBA Ontario study group consisting of Carolyn Monaco, Susan Hall, Cathy
Pascuttini and Cathy Proll had the opportunity to visit Scotland, England, Norway,
Denmark and Vancouver. CDBA Ontario has been working hard ever since to make
the concept of our very own Resource Centre a reality and are proud to say that this
dream has come true!
Canadian Deafblind Association Ontario Chapter’s envisions a future where “all
people who are deafblind will live rich meaningful lives”. The Resource Centre is an
important step to realizing this vision.

Devin Shyminsky
Email: [email protected]
www.cdbaontario.com

Intervenors at Deafblind Ontario Services are now Certified!

Founded in 1989, DeafBlind Ontario Services is the largest not-for-profit

organization in Ontario, Canada providing Intervenor and other specialized services
to adults who are deafblind. With residential locations and community services
programs across the province, our services extend into a wide range of communities
in Ontario.
Our service model ensures our clients goals meet their desires, preferences and
abilities through a person-centered approach delivered by specially trained
Intervenors.
In 2006, the process began to ensure that all employees working with the clients at
DeafBlind Ontario Services learned the important competencies about deafblindness
to provide high quality Intervenor services. The result of this process was the
implementation of TOUCH™ - Training Ongoing Unique Committed Holistic training.
TOUCH™ has gone through several updates over the years, with the most recent
evaluation being funded by the Ontario provincial government in the fall of 2012.
Today, the organization continues to support the provision of a consistent delivery of
training through TOUCH™ towards meeting a professional standard in the field of
congenital deafblindness.
It was that objective of meeting a professional standard in service and believing in
the profession of Intervenor Services that led to investigating alternatives to support
this objective. Over the last two years, we investigated numerous avenues for a
professional certification process for employees who have successfully taken the
internal training as well as met additional standards.
To designate and certify a training program requires a certifying body to review and
ensure quality assurance with respect to the courses required to set standards for
the discipline (Intervenor Services). Prior to any certification and approval, the
certifying body must review the course of study, testing procedures, classroom visits
and the qualification of the instructor(s).
There are several benefits to the employee who successfully achieves Professional
Certification. It illustrates that you are a recognized professional in the field and take
pride in your professional standing, having maintained a high level of training and
work experience.
We are very excited to share that CCCP Global (Canadian Council of Professional
Certification) has accepted, as part of their certification process, our TOUCH™
internal training in conjunction with additional standards. CCPC is a recognized
certifying body both nationally and internationally and has a rigorous process and
standards by which to measure certification. Certification is granted to professionals
working in their specific disciplines who have met the standards set by the
organization and a certifying body (such as CCPC Global). As part of the certification
process a Standards Manual was developed that outlines the standards and
requirements needed towards certification and re-certification on an annual basis.
As a result of this process, Deafblind Ontario Services Intervenors will now be
designated as Certified Congenital DeafBlind Specialists (CCDBS).
Certification provides recognition of the accomplishments of professionals who have
reached a high level of expertise. The professional certification received from CCPC
measures skills, practical work hours and knowledge against a set of standards in
the specialized field of congenital deafblindness.
Certification is just one measure of one of our organizations’ vision statements
“strengthening the competencies of people who touch the lives of individuals who
are deafblind”. We are proud to offer certification to our Intervenors and are
confident it will only lead to more professionalism and the highest quality service to
the people we have the privilege of supporting.

Susan Monahan
DeafBlind Ontario Services
[email protected]
www.deafblindontario.com
www.facebook.com/deafblindontarioservices
Twitter:@DeafBlindON

Conference Unlocks Doors to the Future

The 6th annual Deafblind Coalition of Ontario1 Conference entitled “The Spirit of
Intervenors: Unlocking Doors to the Future” was held at the Hilton Markham Suites,
Toronto, Ontario, March 4-6, 2013. This year’s event was organized by Rotary
Cheshire Apartments.
Evaluations and emails flooded in claiming:
• “This was the best one yet!”
• “Never had I left a symposium feeling so inspired!”
• “I have taken so much knowledge and inspiration from the keynotes. Words
can’t explain what I left with.”
• “Great opportunity to get re-energized, inspired, with great networking, Great
job!”
This year’s event was attended by 275 delegates, speakers, and accessibility staff.
Accessibility staff included practising and student Intervenors, practising and student
ASL (American Sign Language) interpreters, LSQ (Langue des Signes Québécoise)
interpreters and voice over interpreters.
Highlights of the conference include three powerful keynote speakers: Bill Barkeley,
Bapin Bhattacharyya, and Pierre Beaudin. Bill Barkeley, is a celebrated outdoor
adventurer and vigorous advocate for services for individuals who are deafblind like
himself; Bapin is a technology expert/consultant who is deafblind and works for the
Helen Keller National Centre in the USA, and Pierre Beaudin is an Educational
Resource Consultant and parent of a young lady who is deafblind. Delegates were
inspired, encouraged, entertained, and brought to tears by the very personal stories
of these men.
At the plenary sessions, two individuals who are deafblind and their Intervenors
shared their own personal stories on how Intervenor services opened doors to life,
communication, understanding, independence, and simply to the many ice cream
flavours out there for the taking.
In addition to the keynote addresses, attendees had the opportunity to choose from
a varied list of 24 workshop sessions, which included: technology and iPad Apps,
deaf-blindness and mental health, stress and conflict management, sexuality,
orientation and mobility, oral interpreting, cochlear implants, educational initiatives,
and sensory input disorders.
The networking reception was a great opportunity for delegates to meet others and
learn more about the agencies providing Intervenor services across Ontario. These
agencies showcased their services and special events throughout the conference.
At the closing banquet, delegates relived their youth, dressed up, ate decade
inspired candy (think Pixie Stix and FunDip) and danced through the decades.
Everyone learned how to Stompa, as Ronald Remon led the delegates through
choreographed dance moves intended to get everyone up on their feet, stretch and
share as a group.
The conference was funded in part by the Ontario Ministry of Community and Social
Services.
Workshop presentations are found on the website: www.rotarycheshirehomes.org.

Renée Toninger,
Conference Co-Chair
Rotary Cheshire Homes Inc.
101-422 Willowdale Avenue
North York, Ontario M2N 5B1
info@rotarycheshire
homes.org

Ireland

Anne Sullivan Foundation and Anne Sullivan Centre

The Anne Sullivan Foundation for Deafblind was formed in 1989; then the only such
organisation in Ireland. Following that, The Anne Sullivan Centre was then opened
in Stillorgan, County Dublin for a small group of young adults who were Deafblind
due to Congenital Rubella Syndrome. The Centre has always been envisioned as “a
home for life” by its founders, so that adults who were Deafblind could live amongst
their peers and learn important independent living skills while still having the comfort
of a home setting. There are currently ten Deafblind adults living at the Centre’s four
houses which are situated within the local community, while still having close access
to the Centre’s main building where they experience a variety of functional and
leisure activities such as cooking, music, art, multi-sensory, and physical
education/exercise classes.

Outreach Services
For the past two years, the Foundation has been also offering outreach services and
training for Deafblind infants, school-age children, and adults throughout Ireland
through the consultation of Deirdre Leech. Deirdre is a teacher of Deafblind who
came to the Anne Sullivan Foundation after working at Perkins School for the Blind
for 14 years. Providing outreach services to the families and service providers of
individuals who are Deafblind around the country supports the mission statement of
the Anne Sullivan Foundation to help these individuals achieve their highest
potential. Through the outreach services, the Foundation hopes to bring more
awareness to the field of Deafblindness as well as the needs of individuals who are
Deafblind in Ireland, as it continues to be a challenge in a country which does not
recognize Deafblindness as a distinct disability.

For more information, contact the center at: [email protected] or the website:
www.annesullivan.ie; phone: +353 1 830 0562; fax: +353 1 860 3199

India

Sense International (India):

The Challenge to Support 500,000 Deafblind Children, Youngsters and Adults
Invitation
In the years I worked for Kentalis in The Netherlands I had the privilege to be able to
visit my colleagues of Sense International (India) twice, with both visits being very
short. On September 15th 2011, I retired from Kentalis. During my farewell party I
received a surprising video message from Akhil Paul, director of Sense International
(India) (SII) saying: “Ton, now you have the time to come again to India; this time
come to visit some of our projects and see the real India”.
With that invitation, I flew to New Delhi together with my daughter Janneke almost
one year later on November 5th 2012. Thanks to Akhil and his staff, we had the
chance to have a wonderful meeting with the staff of SII; visit two Deafblind Units
(Ahmedabad and New Delhi) and visit Community Based Programs in different
villages in the state of Gujarat and in a few disadvantaged/slum areas in New Delhi.

Meeting the staff of Sense International India

Coming from The Netherlands with a population of 16 million people (as many as
there are living in New Delhi), we met colleagues with an enormous drive attempting
to support approximately a half million deafblind people living among a population of
1.2 billion people throughout 35 different states, speaking 415 languages. What a
huge challenge!
At the time that Sense International (India) started its activities in 1997, only 23
deafblind children were receiving services throughout the country. Recognizing the
huge population of India with its enormous cultural and language differences
throughout the country, SII decided not to choose a strategy of starting up services
entirely by themselves. From the very early beginning they were convinced that a
strategy directed on working together with different partners throughout India and
supporting them to start up services for deafblind people should be much more
successful. And so they did!
Today about 43,000 deafblind individuals are receiving services: 11,000 deafblind
individuals are receiving direct services through 45 partner NGO’s in 21 states while
32,000 deafblind children are included into mainstream education under the
“Education for All” scheme of the Indian Government. To ensure a good quality of
teaching for these deafblind children, SII set up a partnership with the government of
India. Through this partnership over 2500 government teachers are trained on
issues about deafblindness and the appropriate teaching techniques necessary for
deafblind children attending mainstream schools. What a huge difference compared
to the number of deafblind individuals reached only 15 years ago! While this is
impressive in one sense, still less than 10% of the estimated population of 500,000
deafblind individuals receive this service.
During this meeting we had a lively discussion about the future focus and strategy of
SII. Due to the difficult economic situation at this moment, especially in Western
Europe (where 60% of their funding is coming from Sense International U.K.), their
current strategy is to stabilize the current level of activities. This doesn’t mean they
can’t start up new activities.
One of the most important elements in the present strategy is influencing the federal
government of India to ensure that the rights of deafblind people are protected and
their specific needs are met. SII has been very successful in their campaigns since
‘Deafblindness’ is recognised as a unique and separate disability in the proposed
Disability Bill in India. As a result of this, teachers receive specific training for
working with deafblind children in regular mainstream schools.
At the same time our colleagues at SII try to find new partners; stimulate and support
them to take initiatives to start services for deafblind individuals throughout the
country. In nearly all cases this means providing these partners with information and
taking care of staff training. Often it also means supporting these new initiatives
financially. Stabilizing these new programs for the long term means that in the future,
no new initiative can be supported unless one of the partners is able to take full
financial responsibility for their project. While this fortunately happens for some
partners, they all don’t succeed in the long run.

The Deafblind Units in Ahmedabad (the Blind People’s Association) and in New
Delhi (the National Association for the Blind)
In the two weeks following those initial discussions, we had the chance to see
different kinds of projects; several supported by SII and one in collaboration with a
partner. The following are a few impressions of our visits.
The Deafblind Unit in Ahmedabad is on the campus of The Blind People’s
Association. About 20 children and youngsters visit the unit daily. Depending on
their individual needs, they attend the program for 2 to 5 hours each day. Parents
are responsible for the children’s transportation.
Two teachers with assistants are working in the unit. One of them has training from
Mumbai in one year diploma course on deafblindness. She is responsible for training
the other staff members of the unit. As part of the UKAID1 supported project, one of
the hospitals of Ahmedabad recently established an Early Intervention Program
together with The Blind People’s Association. It was special to discover that the start
of this Early Intervention Program was partly made possible by the experiences
learned in the Early Intervention Program supported by Kentalis in Bihar State in
Northern India.
The policy of the unit in Ahmedabad is to integrate the children in the regular school
system, if possible. Three of the children attending the Centre now are working
towards their integration into the regular school system.
It was clear to me that in this Unit there was a focus on total communication. The
teachers and children were using objects of reference, calendars, pictures and
tactile signing. I realized here at this Unit how much we are all part of an
international community working with deafblind children; sharing our experiences.
We were especially impressed with developments in the pre-vocational training
program, with its focus on developing individual skills based on each individual’s
possibilities. In the little ‘production chains’ where they were making postcards,
lamps for Divali2, etc., each of the children made input according to their individual
abilities. Each young adult demonstrated themselves as a valuable member in the
‘chain’. A few of the trainees were not in the Centre that day as they were selling
their products for Divali in a shopping centre.
In New Delhi the National Association for the Blind started the Deafblind Unit in
cooperation with SII in 1999. During our visit, 50 deafblind children were visiting the
unit for the entire week, while 11 children were visiting only on Friday’s. The unit also
coordinates the program of 22 deafblind children who are following the Community
Based Program in one of the disadvantaged areas of New Delhi.
Specialized teachers who have graduated from the diploma course on deafblindness
in Mumbai or Chennai are teaching in the deafblind unit. The children are organized
in four different levels: playgroup (3-8 years), functional education (9-14 years), pre-
vocational training (14-18 years) and vocational training (18-21 years). For each of
the children there is an Individual Educational Plan (IEP) which is evaluated every
three to six month and adapted according to the child’s progress. There is an
emphasis on “learning in the situation” like in shops, marketplaces, etc. for those in
the pre- and vocational training levels.
What stood out in this deafblind unit was the strong cooperation and participation of
the parents. The deafblind unit organises workshops for parents together with the
Association of Parents on a regular basis and is providing support in the home
situation when needed. Parents are always invited to contact the deafblind unit with
any question.

The Community Based Programs in Gujarat and in New Delhi.

Very early in the morning of November 7th Akhil picked us up for a long drive to visit
different villages in Gujarat to meet clients who receive services under the
Community Based Rehabilitation Program (CBR) by Ashirwad Trust for the
Disabled3 and SII. On our way to the first client we picked up Mr. Dipak, the
fieldworker whose clients we would meet.
Our first stop was in the village of Hansa to meet a 22-year young adult living
together with her father and mother. When Mr. Dipak started working with Hansa
she was nearly all the time sitting in a corner of the house or lying on the floor. The
development of Hansa in the last 12 years, which included seven years attending a
regular school, could be best described in terms of ‘from isolation to participation’.
We met a young adult communicating through total communication (finger spelling,
signing and using written large letters on paper and in her hand) and taking care of
almost all of the tasks that has to be done in the house by herself. Most impressed
we were to see that other children from the little village were able to communicate
with Hansa. Her father told us that they include Hansa in their activities without any
thought about her handicaps. Dipak indicated that his support of Hansa was greatly
supported by her parents as well as some people from her village. Currently her
mother is teaching Hansa complex cooking skills.
Our second stop was in Limbdi where we met Mr. Rajesh Sheth, 34 years old and
totally deafblind. He had attended a school for deaf children when he was younger
and learned sign language. Several years after losing his vision he started receiving
support from Mr. Dipak. Together they focussed on self-help skills at home, mobility
skills (since he lost all his mobility skills), communication (a re-introduction to sign
language, handwriting, using email) and re-establishing contact with his friends. He
is now able now to take full responsibility for his part in the home; is easily able to
switch communication modes; produces sweets and runs a shop for sweets, and
has re-established contact with his friends. His friends are communicating with him
by handwriting and email. They pick him up where ever they go. His mother said:
“together with SII and the Community Centre of the Ashirwad Trust for Disabled we
are a chain, nobody can be missed to make this possible for Rajesh!”
Before returning home, we were invited to the Community Centre which coordinates
all the activities of the fieldworkers in this region. At the moment they are serving 27
deafblind children. They have a list of 20 deafblind individuals in this district they
cannot help at this moment due to a lack of resources. Apart from coordinating the
services and training their own fieldworkers, the Community Centre is organising, in
cooperation with SII, summer camps for their clients together with their fieldworkers.
Three times a year they coordinate workshops for parents. One of the strengths of
the program is undoubtedly that they include the community i.e. parents, neighbours
and friends.
In New Delhi we had the privilege to meet four deafblind children in their home
situation: three boys (two of them are brothers) with severe physical impairments
and a girl with challenging behaviour. Not all of the deafblind children identified in
New Delhi attend the deafblind unit, for different reasons. The best choice appears
to support them in their home situation since the parents simply don’t have the
resources to drop off and pick up their children; also their physical impairments
make it too complicated for transportation.
The deafblind unit’s support system is very well organised. The fieldworker has
regular contact with Unit and attempts to visit the deafblind children twice a week.

In conclusion
First of all it was an enormous privilege to be able to meet our colleagues of SII and
their partners, observe their work and have very useful discussions.
Their strategy to focus on partnerships to develop services for deafblind individuals
is without any doubt very successful. I have seen very few organisations which were
so successful in reaching 43,000 deafblind individuals in only 15 years while being
so cost effective. When determining services for these individuals, there was no
consideration of such ideological issues as mainstreaming versus
specialised/centralised education and services. SII suggests what they think will
work best for each deafblind individual or group, depending on the particular
situation. This includes: integration in the regular school system, education in
specialised units, education and training in Community Based Programs in outlying
villages or in disadvantaged neighbourhoods of large cities.
We were most impressed to see the impact on the lives of the deafblind children,
youngsters and adults that we met through the support of SII and their partners. It
was wonderful to observe how involvement in the Community Based Programs often
leads to real participation in their communities. This is rarely seen in Western
European countries.
Having said this, SII faces incredible challenges in the coming years. Coming from
The Netherlands, it seems like an incredible number to have been able to reach
43,000 deafblind individuals. However this still represents less than 10% of the
estimated population. It will require a very balanced strategy of supporting the
current program level (quality and quantity), expanding new partnerships and
insisting that Governments take full financial responsibility for creating spaces for
more individuals.
We met so many dedicated and skilled colleagues during our travels that
encouraged us to believe that this service will inevitably be expanded to include
many more deafblind individuals in India. How wonderful it will be to offer so many
more deafblind individuals, who still live in isolation, the opportunity to participate
with their family and in their community.
With the wonderful image of deafblind children, youngsters and adults
communicating with their neighbours in their communities, we flew home!
Ton Visser and
Janneke Visser
[email protected]

Ton was formerly the Managing Director of Training at Royal Dutch Kentalis, the
Netherlands. He served as Treasurer of Deafblind International
until 2009.
Stories of Change1
Stories about the impressive development demonstrated by three boys with various
levels of sensory and physical impairments through the support of staff from the
Society for the Visually Handicapped in Kolkata, India

The Society for the Visually Handicapped (SVH), a registered non-government

organization in Kolkata, India was founded in 1983 to provide education resource
support to visually challenged persons in their higher education. The Project
Deafblind was taken up to provide home-based life-skill training to the children with
deafblindness and multiply disabled visually impairement (MDVI) in 2004. Trained
educators were recruited to impart the specialized training. Starting with two children
and one untrained social worker, Project Deafblind now has 6 educators who are
engaged in training and supporting 42 Deafblind and MDVI children and young
adults in Kolkata and surrounding areas. Two of the educators were sponsored by
Sense International (India) for the Diploma Course at Helen Keller Institute for the
Deaf and Deafblind, Mumbai2. However, one of them has left the job.
SVH, a premier organization in the field of disability, is a partner with the government
of West Bengal in its programmes on “inclusive education” for persons with
disabilities.
Initially the challenges before SVH were the uncertainties of enrollment of these
children in local schools, because of their inherent “inabilities” to perform like other
children of the same age. Secondly, there was no role model to follow, since SVH is
the only institution in West Bengal to work with the persons with deafblindness and
MDVI. Consequently we concentrated on the Individual Education Plan (IEP) and
kept the periodic records of development for each child. A careful and sustained
implementation of IEP for 4-5 years had transformed most of the “inabilities” of the
children into abilities. Gradually we planned for inclusion of some children in
mainstream schools with the parents’ cooperation.
Here we want to focus on 3 children who are attending general school in their
localities and taking part in regular school activities. These children posed
challenges before us in the initial years of their enrollment into SVH Project
Deafblind.
9 years old Joel Murmu, stays with his parents in Dum Dum, north Kolkata. He has
Cerebral Palsy, vision impairment with speech problems, and was hyper-active. Joel
was enrolled with SVH in September 2007. Joel’s parents, Snigdha and David, were
eager to give him the support so that he can acquire life-skills and they agreed to
bring him to SVH Deafblind Resource Centre, although the distance from their
residence is almost 25 kms. In the initial years, Joel came to the Centre once in a
week and our educator gave training at his residence once in a week. The Impact of
initial training was that Joel’s hyper activity was reduced. He liked to work with the
educator and also his speech was gradually becoming clearer. At this stage, in
2009, he was admitted into a local kindergarten school. Considering his
requirements, SVH then enhanced the home-based training to two days in a week.
In 2010 Joel was enrolled in North Point School, a mainstream secondary school.
Now he is in class III. He is very much comfortable with his class teacher and peer-
group. Braille has been introduced to Joel. Due to his fine motor problem, Joel uses
the adapted stylus. At present, he knows the English alphabet and numbers in
Braille. For diagrammatic representation he uses tactile outlines. Due to sustained
vision stimulation in all these years, he is able to use his functional vision. He loves
to colour pictures by touching the raised outlines. Joel is fond of music and is a good
singer. Now he gets training in playing table and guitar. In all the school activities,
Joel finds a place to perform. In SVH annual programmes, we encourage him to take
part. The parents of other children, who have seen his achievements, now cherish
the dream of their wards’ future. This definitely brings attitudinal change in parents!
Sourav Sarkar was referred to SVH in 2008 by a physiotherapist at the Indian
Institute of Cerebral Palsy3 (Kolkata). The family resides in a slum in Tollygunge,
south Kolkata. His mother Saraswati is employed as domestic help and remains out
of house for the major part of the day. His father Sanjib is a casual worker in building
construction. Eight years old Saurav Sarkar stays in a slum in Tollygunge, with his
parents. He has congenital cataracts, bilateral severe hearing loss with speech
impairment and is diplegic4.
The initial training took place at his residence, in a very small room. At that stage
Saurav could crawl to move from one place to another. We first introduced him to
gaiter5 for both feet to allow him to stand by holding parallel bars. With our
consultant physiotherapist’s instruction afterwards, SVH provided an AFO (ankle-
foot orthotic) and wheeled walker to him which helped him to move about with
minimum assistance.
In 2010 Saurav showed remarkable developments after his bilateral cataract
surgery; he became partially sighted with the use of spectacles. By observing his
visual developments, his mother Saraswati became motivated to follow the teacher’s
instructions, and left her work service to bring her son to our centre for vision and
tactile stimulation. This proved very much beneficial for him. He was taught to
express his preferences through playing and shopping activities. He started showing
his preference by finger pointing. However he is yet to learn communication through
sign language. In 2011, he received admission to the local municipal school. Since
then, Saurav has developed a positive interaction with his teachers and peers. He is
able to take part in various group activities of his class. Due to the lack of proper
infrastructure in the municipal school, he is now attending the Circle Resource
Centre for the children with special needs located near his residence. This centre is
maintained by the Sarva Shiksha Mission6, a Government of India education
programme in Kalkota. Saraswati takes him to the centre on the allotted days. I,
myself as educator of Saurav, provide him additional support to continue with the
school curriculum. The mobility training has helped him to move around
independently. He can now climb up stairs of the SVH Centre by holding the stair
rail. In 2012 Saurav happily participated in a drama rehearsal and followed the
instruction of the trainer.
Deep Gosh, a boy of 11 years staying with his mother in a village named Kulgachhia
in Howrah, was referred by Howrah Sarva Shiksha Mission7, in 2010. He has
Congenital Rubella Syndrome. Recently he has been diagnosed with juvenile
diabetes. During that time, he was studying in class III in his village primary school.
Due to his low vision, mild hearing loss and speech problem, he was unable to
communicate his needs to his teachers. His communication problems had not only
affected his studies, but segregated him from his peers in the school as well as in
the community.
Our concern was to create a situation so that he can continue in school education
and take part in school activities. SVH allotted the task of need-based support for
Deep to teacher Biswajit Chakraborty. This definitely put a pressure on SVH faculty,
as Deep’s residence was outside the SVH orbit, and this assignment made Biswajit
unable to work for any other child on that day. It takes four hours train journey to
reach Deep’s house/school, with one change in train, and availing any other local
transport service. The return journey also takes the same time. Biswajit started
visiting Deep’s house once in a week from January 2011.
Deep’s speech improved very much with some aural-motor training, like blowing
balloons or paper, making soap bubbles, etc. Since language skill was not properly
developed, Biswajit put emphasis on simple word making and pronunciation, leading
to sentences. Presently, he is very much comfortable with his peer group and can
take part in various group activities with sustained training; all these have improved
his academic performances. He can follow class instruction & can appear for oral
and written examinations with some adaptations; he uses dark border line, black
pen, and exaggerated speech, etc. Besides these, Deep is fond of drawing pictures
of his environment. Finding this potentiality in him, we provided him the support from
a professional trainer.
SVH is committed to enhance the capacities of these three children so that they can
continue their school education. For Joel and Deep, we are planning to introduce
them to computer education and use technological devices, since both of them are
of low vision. As Deep is fond of painting, we support him for his drawing classes,
and think about diversifying this skill in other artistic activities. Joel is a good singer,
and loves to play the indian drum Tabla. Besides academic learning, these other
skills need to be enhanced in future. We are careful in providing Saurav other skills
beside formal academics, because of his family’s economic condition. He has been
introduced to mala (flower garlands) making through plastic flowers. Our aim is to
lead him towards costume jewellery-making in the future.
We are exploring other activities for these three boys so that a proper “transition
planning” can be adopted at their right age. Although we have brought them into the
‘Inclusive Education’, they have a long road ahead of them which will not be smooth
but the progress so far promises a lot for their future.

Mallika Das, Special Educator

Project Deafblind, Society for the Visually Handicapped
www.svhwestbengal.org
Two Parents start a school and create a Community of Hope

“What will happen to our child once we are gone?” wondered Prakash and Usha Bal,
parents of a child who was born blind and with severe autism in a northern suburb of
Mumbai, India. “That was our wake up call,” said Usha.
That wake-up call led the couple to establish the SOBTI Vocational Training Center
in January of 2007, the first school in the region to accept children who have multiple
disabilities. At SOBTI – the name means companion in Hindi —the primary focus is
on vocation and life skills trainings. Students learn to create numerous items
including artificial jewelry, seasonal food items, candles, and greeting cards.
Perhaps the greatest key to success is the involvement and partnerships that the
teachers and students have with the parents, said Prakash Bal. Not only do the
parents learn important ways to communicate and interact with their own child, but
they play a key role in teaching life skills to all the students. This includes weekly
outings where they take the students to many places in the city via public
transportation. Whether the goal is to go to the market and buy vegetables or simply
to make students more aware of the outside world, the result is an increase in
independence, confidence and sense of responsibility for all the students.
SOBTI was the answer for Gaurav Vijay Singh, who, at 2 years old, had lost both
eyes due to cancer. Like many of the students at SOBTI, Gaurav was accustomed to
being turned away from schools. By 2006, at the age of 12, Gaurav and his parents
had all but given up on his education when teachers from the National Association
for the Blind (NAB)—a Perkins partner organization—arrived at their home. The
teachers recognized Gaurav’s capacity and desire to attend school and they knew
exactly where to send him.
Today, 18-year-old Gaurav is a star student at SOBTI. He is in grade seven and he
can read and write braille. Gaurav shops and cooks on his own, and he dreams of
going to college and becoming a doctor.
The success of students like Gaurav has led to SOBTI’s recent growth. In 2010, in
order to meet the increasing need for a center in the western suburbs, Perkins
International financed the establishment of a second center and NAB offered them a
space they could use at nominal rent. Both SOBTI centers continue to work in close
collaboration with the NAB.
Thanks to the Bals’ commitment, the overwhelming dedication of the teachers, and
the SOBTI Parents Association, many parents of children with multiple disabilities
now possess the comfort of knowing that their child has a secure future. The story of
SOBTI is truly the story of a successful partnership, said Usha Bal.
“Perkins gave us the training,” she said, and “NAB gave us the inspiration.”

www.perkinsinternational.org/success_stories

www.perkinsinternational.org/success_stories/two-parents-start-school-and-create-
community-hope?
Reproduced with permission from Perkins School for the Blind
Japan

Towards disability and development:

A Report of the Asia-Pacific Regional Consultation

The United Nations convenes a High-level Meeting (UNHLM) on various subjects

before the UN General Assembly every year. The UNHLM this year in New York will
be held September, 23, 2013 with the theme, ‘Disability and Development’.
There are many UN conventions, statements and other internationally agreed
development goals, but few of them mention disabilities and their specific needs.
This is true also for the Millennium Development Goals (MDGs). Within the UN,
there has already begun a discussion about their development agenda towards
2015 and beyond. Without a doubt, we strongly believe that persons with disabilities
should be recognized in all aspects of these discussions.
To prepare for the 2013 UNHLM, regional consultations are being organized in
Africa, Europe, South America and in the Asia-Pacific Region. Consultations in the
Asia-Pacific Region convened 15-16 May 2013 at the United Nations Conference
Center, Bangkok, Thailand, with the theme ‘The Way Forward: Asia-Pacific Regional
Consultation on a Disability-Inclusive Development Agenda towards 2015 and
Beyond’. The outcome of this consultation will be presented to UNHLM September
23, 2013. I am happy to report about the recent consultation meeting.
The Asia-Pacific regional consultation process consisted of senior representatives
from governments, disabled people’s organizations, civil social organizations (CSO)
and other international organizations from the region. The World Federation of the
Deafblind (WFDb) was officially invited to this meeting as one of the CSOs.
Shinichiro Kadokawa from Japan (SMILE) was present as the official WFDb
representative from Asia.
The objectives of this consultation were two-fold: first to provide an opportunity for
the Asia-Pacific governments and relevant stakeholders to exchange views on
disability-inclusive developments; second, compile these regional inputs for inclusion
in the draft outcome document to be presented at the September UNHLM. This
consultation process was organized by the Royal Thai Government, in cooperation
with the Australian Government, the Economic and Social Commission for Asia and
the Pacific (ESCAP) and the World Bank.

The Consultation Process

On the first day of the Consultation meeting, the group discussed the working report
called the ‘Draft Bangkok Vision’ which was prepared by the Secretary for ESCAP
and received in advance by all participants. The draft vision became the focus of
discussion by all the participants, WFDb and World Federation of the Deaf (WFD)
during the first day.
First, it is necessary to point out that all the participants had an opportunity to speak
at this meeting, but the right to vote on the final wording is only carried by senior
representatives from the governments. It was very important for individual
participants with disabilities not only to appeal for their own individual specific needs
but also to negotiate with other organizations to encourage governments to adopt
‘the voices of those of us who are challenged or who have disabilities’ and organize
a consensus of thoughts and ideas in the final report.
In the initial Bangkok Vision discussion paper there was a statement prescribing
Universal design1 and accessibility as follows:
“Incorporate universal design in and ensure the full accessibility of, all of physical
environment, public transportation, as well as the knowledge, information and
communication infrastructure, and services for the public.”
We were not happy about these initial statements as we felt it was not enough to
meet the Information and communication needs of people with deafblindness. Shin,
standing up for the ‘voices of the unheard’ who face challenges of information and
communication, made the following significant points during the first day of
discussions:
l Article 21, Convention on the Rights of Persons with Disabilities (CRPD)
addresses and ensures the right to freedom of expression and opinion;
l Accessibility has two distinct aspects which are visible as buildings and
transportation and invisible as information and communication.
l CRPD defines communication in Article 2 and mentions that sign language is
the language of the deaf; the importance of sign language is indicated in the Incheon
Strategy2 which provides the Asian and Pacific region, and the entire world, with the
first set of regionally agreed disability-inclusive development goals.
l To ensure the accessibility of information and communication, an appropriate
budget is necessary. (Shin acknowledged that AusAID provided the financial support
to enable the participants to attend the meeting.)
Then Shin together with representatives from WFD and Inclusion International3,
made a joint statement based on some of the original draft, Shin’s proposals and
other discussions.
On the second day, the participants reviewed the second draft produced following
day one.
The second draft report included the following statement regarding Enhance access
to the physical environment, public transportation, knowledge, information and
communication:
“Incorporate universal design in, and ensure the full accessibility of, all of the
physical environment, public transportation, as well as the knowledge, information
and communication infrastructure, and services for the public. Facilitate the use of
assistive technologies. Provide reasonable accommodation. Strengthen access to
services and technologies for enabling communication by and with deafblind
persons, deaf persons, hard of hearing persons, as well as persons with other types
of disabilities.
Again this statement (above) in the second draft did not reflect their proposal and
original statement.
Shin continued to speak out by emphasizing their proposal and the joint statement.
Through further discussions, a revised proposal was developed by Shin and a WFD
participant, which eventually achieved support from the other CSO members. One of
those supporters was Mr. Monthian Buntan, Senator, Royal Thai Parliament and
Member Committee on the Rights of Persons with Disabilities.
The controversial article was elaborated the below.
“Enhance access to the physical environment, public transportation, knowledge,
information and communication: Ensure the full accessibility for all of the physical
environment, public transportation, as well as the knowledge, information and
communication infrastructure, and services for the public, by incorporating universal
design, facilitating the use of assistive technologies, and providing reasonable
accommodation. Strengthen access to services and technologies for enabling
communication by and with persons who are deaf, deafblind and hard of hearing, as
well as persons with other types of disabilities, through the provision of sign
language, tactile communication, Braille and easy-to-understand materials, among
others”.

Through further discussions, a revised proposal was developed by Shin and a WFD
participant, which eventually achieved support from the other CSO members. One of
those supporters was Mr. Monthian Buntan, Senator, Royal Thai Parliament and
Member Committee on the Rights of Persons with Disabilities.
At the end of the day the final report which included Shin’s final statement, various
amendments from various regional governments, organizations and persons with
disabilities became the Bangkok Consensus which will be presented at the UNHLM
in New York in September 2013.

The Bangkok Consensus

There was general consensus among the participants that the consultation
document prescribes the following required actions for inclusion developments:
1. Reduce poverty and enhance work and employment prospects;
2. promote participation in political processes and in decision-making;
3. enhance access to the physical environment, public transportation, knowledge,
information and communication;
4. strengthen social protection;
5. expand early intervention and education for children with disabilities;
6. ensure gender equality and women’s empowerment;
7. ensure disability-inclusive disaster risk reduction and management;
8. improve the reliability and comparability of disability data;
9. accelerate the ratification and implementation of the Convention on the Rights
of Persons with Disabilities and the harmonization of national legislation with the
convention, and
10. advance subregional, regional and interregional cooperation.

Nothing about us without us, a very famous slogan which came from the process of
CRPD, was practically carried out in Bangkok.
Akemi Fujii
SMILE
[email protected]
www.deafblind-smile.org

Mexico

“Multiple disabilities and deafblindness” online course – 2012

The Mexican Secretary of Public Education, through the national office of support for
state programs in Special Education and financed by Perkins International, offered
in 2012 for the third year an on-line training course on Multiple disabilities and
deafblindness to special education staff and parents of children. This course, which
includes 120 hours of instruction and discussion groups offered over a five month
period, has to date reached 300 parents and professionals in 38 states of Mexico as
well as in Colombia, Peru and Bolivia. This course is delivered through a platform
donated by the Office of Special Education in the Capita District of Mexico
(sepdf.gob.mx).
In Mexico the course is delivered by expert tutors previously trained by Perkins
International. Each tutor works with a maximum of 20 participants. In 2012, 80
persons were admitted into the course from 200 applicants. For the first time 7
parents were included in the training. Also important was the participation of several
statewide consultants of special education who are responsible for training and staff
development of services in their respective states.
Two comments from participating MOTHERS:
“My infinite gratitude for allowing me to participate in this great course!! I would be
lying if I said that it was not a lot of work. I am a single mom, no degree. But I am
always up for a new challenge and this was worth my effort. You succeeded in
meeting my expectations....”
“Thank you for all the support to the whole group, because in my case this is new
and there were many terms and words that I didn’t understand. You explained
perfectly and every time I received that patience and support of the tutor. I only
finished this course because of the support from you!”
It is important to note that in this course there were a number of state special
education consultants who have offered to replicate this information to local school
districts and regional services. Many of the special education centers have no
information on this topic. The participation of these state consultants added a
different dynamic to the course as they do not work directly with children. Some
used the time to identify individual children who are Deafblind or with multiple
disabilities, applying the skills they learned from the course. This experience has
shown the need to continue to reach out to the supervisors in each state to expand
the impact of the on-line learning.
Some comments from the state consultants:
“It is very important to recognize had little knowledge of this type of disability and the
need to know strategies to advise staff of regional special education centers was
obvious. During the course the learning of specific methods and strategies led me to
the development of new projects to be carried out in the coming year.”
“The course is very rich and interesting, in my case it has allowed me to expand the
knowledge to care for the students, shared with the teachers and principals from my
advisory role. The opportunity that we had to share the experiences of colleagues in
other States of the Republic already allowed me to not feel “alone” in addition to the
possibility of creating a network of professionals. I appreciate the opportunity given
to me to participate and receive the training by this means which enables us to
update us in the profession.”
This is an example of the many observations of the teachers on the course:
“After living this experience I have the need to continue preparing myself on the
subject, seize me more strategies to respond to the specific needs of the students
we serve, and above all starts the real challenge move everything learned to my
context and contagious enthusiasm that characterized the group that work with my
colleagues in area to carry the light of hope that students with multiple challenges
can be independent, self-sufficient, lead a full life within the society.”
Based on the analysis of questionnaires completed by the wide range of
participants, the following were the most significant aspects learned during the
online courses:
• Everything that relates to the human rights of persons with disabilities;
comparing with the laws of the various Mexican States and the United Nations
Convention
• Etiologies, and characteristics of multiple disability and deafblindness
• Person centered planning
• Alignment of the functional curriculum with the national curriculum
• Transition to adult life
• Communication maps
• Sensory Integration
• Alternative Communication
• Functional Assessment

Irma Guevara Vega

La Secretaría de Educación Pública
Mexico City, Mexico
Email:
[email protected]

Thanks to Steve Perrault for assistance with the final English translation
Netherlands

‘I retrieved my identity’

Charlotte van de Molengraft (64), from Eindhoven (the Netherlands), once a sighted
person became deafblind. This is why she is following the Tactile Training and
Creativity Development Program at Kentalis1. This is an updated training course that
provides Charlotte with the opportunity to be creative and develop her sense of
touch.
If you can’t see, you have to do everything by touch. “I had to learn this,” says
Charlotte. “I started out by putting together small pieces of work. At first, I often
doubted myself and thought-I can’t do this. In fact, I thought I could not do anything
anymore. But by doing it anyway and thanks to the support I received from the
supervisors (at Kentalis), I now realise that almost anything is possible if you set
your mind to it.”
Small pieces of work developed into beautiful works of art. “I can do much more by
touch now, which is very useful in daily life. My ability to do things independently and
my self-confidence have improved greatly. I am better able to show my emotions
and process impressions; I have retrieved my identity.”
Charlotte follows the training course in a group of six to eight deafblind people. “It is
very informative: they learn things from me, as I learn from them. This also allows
me to keep up my common-or-garden signals and learn new words. We talk about
problems and questions, such as household issues.”
Charlotte has made many works of art, such as mosaic paintings, clay dolls, dolls
clothing, pots and paintings.”I did a painting with flowers from Brazil, where I once
visited. Creating this painting was a double experience: I learned how to work with
new material and was able to process the impressions of my journey and make them
tangible, because looking at pictures is no longer an option for me.”
“I really recommend this training course. I know the satisfaction it brings when you
make something beautiful. And maybe more importantly: this course improves your
self-esteem.”

Charlotte van de Molengraft

Romania
Mini-typography workshop for deafblind children opened in
Bucharest
Sense International (Romania), in partnership with the Special School for Children
with Hearing Impairments “Sfânta Maria”, organized the official opening of a mini-
typography workshop within the school in Bucharest on May 29, 2013.
It was an event full of light, colour and sound, where deafblind children and
youngsters, together with their parents and grandparents, guests and teachers,
enjoyed this special achievement together. The mini-typography workshop,
equipped as part of the project A SENSE FOR LIFE, implemented by Sense
International (Romania), Bucharest School Inspectorate, Special School for Children
with Hearing Impairments “Sfânta Maria” and Bucharest Town Hall, Sector 6 and
funded by Orange Foundation, means for these children “a dream come true, a
chance for a better future”, as described by Mr. Dumitru Cioiu, father to one of the
project beneficiaries.
Youngsters will discover the secrets of digital printing and they will learn how to use
the special equipment (binding machine, manual stapler, electrical guillotine,
professional photocopier, computer) to produce various printed materials – from
business cards to flyers and from booklets to magazines.
The workshop’s direct beneficiaries are deafblind/multisensory impaired children and
young people, pupils of the Special School for Children with Hearing Impairments
“Sfânta Maria”, who will acquire the necessary skills and knowledge in the field of
digital printing, so that when they graduate they will have increased chances to find
a job and lead an independent life.
Mrs Cristiana Salomie, Director of Sense International (Romania) emphasised the
importance of “collaboration, working together so that this workshop becomes
functional, useful both to young people learning a new trade and to the community
which may use the services of the digital typography”.
The host of the event, Mrs Florica Stoica, Director of the Special School for Children
with Hearing Impairments “Sfânta Maria”, thanked all those present, especially the
beneficiaries and their families.
This workshop is part of a larger scheme, a project implemented in Bucharest, Galati
and Iasi, benefitting from a financial support of 50,000 Euro from Orange
Foundation1.

Edited Press Release,

May 30, 2013

For more information, contact: Cristiana Salomie, Director Sense Internațional

(România)
www.surdocecitate.ro; email: [email protected]
1
Orange foundation’s mission is to create links between individuals, and in
particular to make communication easier for those who are excluded for several
reasons; health, handicap or because of their economical situation.
(www.fondationorange.com)
South Africa

Independence blooms from a simple piece of fabric

When customers at a small boutique in Pietermaritzburg, South Africa, purchase

colorful fabric flowers or creatively designed cards, they probably have no idea that
those items were made by a 17-year-old girl who is deafblind and in a wheelchair.
That girl is Alicia, a student at the Arthur Blaxall School for children who are blind or
deafblind. About 200 students, ages 5 to 19, attend.
Like many of her fellow students, Alicia took a class where she learned how to sew,
using only her very limited vision and her sense of touch. That skill, along with
encouragement from two special teachers, transformed Alicia’s life.
However, sewing might have remained just a hobby for Alicia if not for Winsome
Bukus, a longtime teacher at the school.
Bukus is a graduate of Perkins’ Educational Leadership Program, which teaches
educators from around the world how to more effectively work with children who are
blind with additional disabilities. Bukus recognized Alicia’s intelligence and urged her
to study hard and believe in herself.
Two years ago, Bukus established a fundraiser called “Dinner in the Dark,” where he
invited members of the Pietermaritzburg community to eat a three-course dinner
without the benefit of sight or hearing. The event raised awareness about the
challenges faced by people who are deafblind.
Tragically, Bukus died in 2012, so that year’s dinner was dedicated to her memory.
Each of the 300-plus guests received a blindfold and earplugs in a special gift bag,
made from delicate chiffon fabric, sewn by students from the Arthur Blaxall School –
including Alicia.
Sitting in her sewing class, Alicia carefully guided the sheer, silky fabric through a
sewing machine to create gift bags for the memorial dinner. Her teacher Fiona
Parker observed Alicia’s gentle touch and accuracy. Parker is also a graduate of
Perkins’ Educational Leadership Program, and, like Bukus, recognized Alicia’s
potential.
Parker returned the next day with a fabric flower constructed from cloth and a button.
She carefully took the flower apart and guided Alicia’s hands through the process of
making it. After learning that Alicia’s mother owned a sewing machine, Parker began
acquiring scraps of fabric and old buttons from a friend’s clothing company. At the
end of each school day, Alicia took the materials home and went to work sewing
flowers.
Over the course of four months, Alicia made more than 300 flowers and with help
from her parents, persuaded a local boutique to sell them. She broadened her
inventory to include cards she designs and draws herself. She also started taking
orders for gift bags for local birthday parties.
Inspired by Alicia’s success, the Arthur Blaxall School is now expanding its efforts to
teach other students vocational skills that will allow them to become more self-
sufficient.
One teacher, Corinne Pillay, is developing a functional curriculum that will give
students more opportunities to develop skills in a natural environment. For example,
a trip to a local market will allow students to practice mobility, communication and
counting skills. Pillay, who attended the Perkins Summer Institute, is also working to
expand vocational training for students. The school’s staff hopes that their new focus
on real-world and vocational skills will open more doors to jobs and independence
for students.
For Alicia’s family, the sight of their daughter hard at work with her mother’s sewing
machine is clear evidence of the benefits of a good education and vocational training
for students who are blind or deafblind.
“My daughter now has a skill to make a living,” Alicia’s father said proudly. “I want to
thank the people at Perkins. Thank you for helping these teachers give my daughter
more skills and a future.”

See more at: http://www.perkinsinternational.org/success_stories/independence-

blooms-simple-piece-fabric#sthash.ut4IBY0s.dpuf

Passable Landscapes
Children with Usher Syndrome must be equipped to manoeuver in ‘passable
landscapes’. New Danish research by Jesper Dammeyer Ph.D., in cooperation
with educational consultant Bente Ramsing, shows that more than half of all
children with Usher Syndrome develop symptoms of psychosocial
dissatisfaction before the age of 18.
By Bente Ramsing (bero.rn.dk), educational consultant, Center for
Deafblindness and Hearing Loss (CDH), Aalborg, Denmark (www.cdh.rn).
Translated from Danish by Dea Birgitte Hansen and Marie Herholdt Jørgensen,
The National Board of Social Services (SOCIAL STYRELSEN)

The research supports practitioners’ experience of the development that the

consultants at Center for Deaf-blindness and Hearing Loss typically observe in
children with Usher Syndrome. In the following, I will provide a description of the
functional issues I have been observing in practice, and I will give a number of
suggestions as to what parents and professionals may do in order to support a
normal development in a protected educational environment.

Usher Syndrome
Usher Syndrome is a recessive inherited syndrome, inherited from both parents.
Mostly, the parents are healthy with the syndrome hidden in their genes. The
parents are often unaware of the fact that the syndrome is found in their families.
There are three types of Usher Syndrome which cover at least nine different
subtypes. Usher Syndrome type 1, which covers most of the nine subtypes, is the
most pervasive. I mainly focus on type 1 in this article.
At the time of the study we knew of 20 children under 18 with Usher type 1 in
Denmark. An individual with Usher Syndrome type 1 is born with severely reduced
hearing or born entirely deaf. The person also has the eye disease Retinitis
Pigmentosa and serious difficulties with vestibular processing.

From deaf to hearing-impaired

In Denmark deaf and severely hearing-impaired children, including children with
Usher Syndrome type 1, are offered a double-sided Cochlear Implant within the first
year of life. The Cochlear Implant, usually called CI, is an advanced hearing aid
which is operated directly into the cochlea of the ears. Formerly, people with Usher
Syndrome type 1 in Denmark always used sign language; but within the last 10-15
years almost all children in Denmark with Usher Syndrome type 1 have had a
double-sided CI, and most of them have developed their spoken language
satisfactorily.
The fact that the children have spoken language and are integrated into the hearing
world poses them with great challenges, as they are still deaf in many contexts, e.g.
in very noisy surroundings, in swimming facilities, at night and in other situations,
where CI cannot be used or does not function as normal hearing.

The eye disease Retinitis Pigmentosa

The eye disease Retinitis Pigmentosa is also called RP or tunnel vision. RP is a
progressing disease in the retina with a slow loss of sight. Many RP patients contain
a little residual eyesight in the central vision their entire life, while others go blind
during their adult life. The retina is affected from the outside in, and the person at
first loses their navigational sight and the ability to see in poor lighting.
A severe sensitivity to light often means that the child, already as a newborn, will
need to wear a cap and/or sunglasses. It often takes the eye several minutes to
adjust to changes in the light, and every time the light changes during the day, the
person will lose the ability to see properly for minutes at a time.

The vestibular sense – balance and loss of energy

The body uses the vestibular sense for receiving signals about how it is situated in
relation to its surroundings. As consultants we often observe that children with Usher
Syndrome have hypo-toned muscles, which, combined with poor or no vestibular
sense, causes difficulties with movement and balance, which are at first manifested
in a developmental delay regarding sitting up, standing and walking. The children
struggle with the task of making their reduced sense of sight and hearing collaborate
with a body challenged significantly by vestibular difficulties.
What is it like to exist in the world like that? Balance is talked about as a thing to be
‘found’, but it is not simply found. It must be adjusted to the surroundings, from a
safe base. It requires extra energy, physically as well as psychologically, for a
person with Usher Syndrome to find balance.
A boy once told me how he felt when playing a ball game: “Sometimes my foot
slides and I must put it into place again, and while I do that I can’t really see
anything.” The boy expresses quite clearly that he loses focus on the thing he is
doing, when his balance fails, and he might even lose the ability to use his other
senses optimally. I often wonder how many times during a day people with Usher
Syndrome experience that?
Children with Usher Syndrome use a lot of energy every day because their senses
work overtime, and sometimes their energy runs out, and they are worn out with
fatigue or reacts with tantrums.
The following is a story about what happens when people face situations in which
they lose orientation, overview and the ability to act.

Passable landscapes
On a winter’s day a few years ago, I visited a friend who lives in a cottage a little
distance from the main road. It began snowing heavily, and when I was driving
home, I got stuck in the snow after about 800 meters.
Time was dragging away, and I experienced a number of emotional states during
the time I sat there. How might this day end? I tried clearing away the snow in front
of the car. I sat totally still in despair, and I tried to find strategies that would get me
out of there.
As time went by more cars came, and after some time, which felt like an eternity, a
local resident called the local authorities. They sent a vehicle to clear the way and
guide us to the main road.
Now, who was I, sitting there, stuck in the snow?
• Someone with anxiety, who did not know how it would all end (a psychiatric
case)?
• Someone shoveling snow, fighting for her life (reacting)?
• Someone who despaired (a victim)?
• Someone competent, with thoughts and emotions, waiting to be guided into a
passable landscape?
• Someone like everyone else, but stuck in a difficult situation?

I believe that I experienced all of the above during the hour and a half I sat there.
Let us imagine that deafblindness is a condition that puts itself between the person
with Usher Syndrome and the world, or between his/her relations to others, similar to
the snow between me and the main road, when the snow was falling heavily.
Let us assume that the child’s reactions such as being afraid, having a tantrum or as
a victim are not psychiatric disorders but reactions to the deaf-blindness.
Let us for a moment lean against the hypothesis that people with Usher Syndrome
fundamentally are human beings who need support to travel in passable
landscapes.
In the following, I will describe the difficulties we typically observe in the child with
Usher syndrome type 1, and what kind of support the child between 0 and 18 years
of age needs.

The small child with Usher Syndrome

When a child is born with Usher Syndrome it is my experience that you soon
observe a child who has difficulties with eye contact. You see a child whose eyes roll
a little in their sockets and who has difficulties focusing. This is particularly apparent
when the child is in your arms and you move in different directions.
At this point the child is already challenged by the vestibular difficulties which mean
that it takes longer for the child to understand the world, especially when it is
moving. Therefore the child seems to prefer to lie still and contemplate the world in
its first year of life. From birth the child appears to have a hypo-toned or lax body. It
is difficult to determine whether the child is born that way, or if it is the vestibular
complications that causes the muscle strength to not develop properly.
Being a parent to a child with Usher Syndrome is difficult. The parents intuitively
understand that the child prefers to lie still, but they know that the child needs to
move in order to develop his/her motor function, and connect the first impressions of
the world in order for the world to make sense. It will also be of concern for parents
and professionals that eye contact is not very good.
The child with Usher Syndrome often sits up late, and stands and walks even later.
When sitting, the child will often choose a broad supporting surface, for example
with his/her legs in a W-shape or with widely spread legs. When the child is tired it
often leans forward in sitting position, placing his/her upper body and head on the
floor, supported by the chin to still be able to see what is going on in front of him/her.
Moreover, experience from practice shows that children with Usher Syndrome
typically begin to walk when they are between 1 ½ and 4 ½ years old. According to
Jesper Dammeyer the average age when children with Usher Syndrome take their
first steps is 24 months.
In Dammeyer’s study, four out of the 26 children examined for Usher Syndrome do
not have difficulties with the vestibular sense. Children with Usher Syndrome type 1
will often retain a very wide-based gait.
Gait as well as running often looks very insecure, until the child reaches school age,
and maybe even further.
When the child shifts from lying down to sitting, or from standing to walking, it has to
use time and energy in order to understand the world from the new position. And as
the child uses a lot of energy to compensate for the loss of senses and motor
function, we often observe that other functions such as language acquisition are
delayed, and the development of the language is often slower than in other children
with CI.
Dammeyer suggests that the combination of reduced sight, reduced hearing and
delayed motor development is one of the barriers in relation to developing language
and social competences. In Dammeyer’s study, eleven out of twenty six children with
Usher Syndrome (type 1 and 2) appeared to have delayed language development.
The extent of the delay is significantly linked to the level of deafblindness in the
study.
Most children with Usher syndrome will have integrated their understanding of body
and surroundings with sight and hearing during the age of five to six years, and
subsequently language begins to develop extremely fast. Some children manage to
acquire language appropriate to their age before they start school at about six, while
others do not have enough time between learning to walk and becoming cognitively
ready to attend school.

Case: Rachel
Rachel is born with Usher Syndrome. Because she has an older sister with Usher
Syndrome, it was detected early. The first year she lies a lot and looks around, but
because of her older siblings her motor function is challenged. She is able to sit up
at the age of 11 months.
When she is sitting, her eyes roll a lot, and when she loses her balance she does
not seem to have normal fall reflexes and falls. She quickly learns to sit with her legs
widely spread and falls forward with her chin on the floor. From there she either rolls
over to her stomach or her back, to fight her way back up to a sitting position. She is
not very keen on lying on her back, because it is not sufficiently strong for her to be
able to lift her head for a longer period of time.
Rachel learns to crawl late and stands up late. She takes her first steps without
support when she is about three years old. Shortly after her CI-operation, when she
was about one, she began intensive speech therapy a few times a week. The
therapy continues until she starts school. Until she is about five, her language
development proceeds very slowly and is not age-appropriate.
Nevertheless her language development speeds up at the age of five to six, and her
language develops twice as fast as other children at that age with CI. She starts
school with a year’s delay, and at that time her language is age-appropriate. The
fact that Rachel suddenly develops her language so fast suggests that the language
delay was due to the complex multiple reduced sense functions and not to cognitive
barriers.

Intervention for children with Usher Syndrome from the age of 0-7 years
Rachel’s progress is rather normal for most children with Usher Syndrome and CI.
However, as mentioned earlier, some children have not got enough time to develop
from when they start to walk until they should be ready to go to school at age six.
For other children, knowledge about Usher Syndrome in their surroundings has
been scarce, and therefore focus has been on the things they were unable to do.
Some children with Usher Syndrome have been assessed for learning disability,
autism or other disorders prior to school.
Some are provided with a diagnosis, which may result in them being placed in a
special school which does not specialize in CI and hearing impairment, but in
learning disability or autism. If this is the case the child may no longer be expected
to develop typically and catch up with the delay when the senses have learned to
function together. Without specialized knowledge about Usher Syndrome there is a
risk that many resign themselves believing that the child will not be able to learn that
much. Parents and professionals thus need detailed knowledge about the early
development in the child with Usher Syndrome and exhaustive knowledge about
integration of senses and an understanding of the child’s motor development.
Supporting the child’s development the first seven years is about understanding the
complex situation the child faces and understanding the child’s different ways of
behaving and the child’s need for extra time and support for development. The child
needs to be seen, understood and guided into landscapes which are passable for at
small child with motor and language difficulties.

The school child with Usher Syndrome

For many children with Usher Syndrome, the age from seven to 10 years is a good
and stable period of their lives. They have a fair grip of their motor function and their
language develops steadily. When I have asked people with Usher Syndrome when
they have had a really good spell in their lives they almost always refer to places
and situations from the time when they were about seven to ten years old.
Between 10 and 14 the problems with sight may become more pronounced, and the
child once again has to reorganize his/her senses and body in relation to the
surrounding world. The child becomes more reflective and needs age-appropriate
explanations as to why he/she sometimes does not feel like other children and why
he/she is not capable of doing quite the same things as other children.
It is thus important to externalize the deafblindness and make the child understand
that it is a condition in the child’s life which may put a barrier between the child and
the world, or between the child and the relations he/she wants to be part of. The
deafblindness is experienced differently in different situations.
Communication may not be an issue when the child is sitting with a friend in a place
with good lighting. However in a dark school yard on a winter morning, the disorder
may cause the child to need support to communicate and find his/her way back into
class. The child therefore develops various strategies in order to be able to live in
the chaos he/she faces.
For some children this means that they develop anxiety and psychiatric symptoms,
act or react with tantrums, or become quiet, gloomy or introverted. Quiet and
introverted children may turn the problems against themselves or become victims of
bullying.
At this age the child often experiences a change in their social life with other
children. Playing switches to talking, and it gets harder to divide ones attention
between playing, a computer game, and being a part of the social communication at
the same time. The child begins to understand the consequences of his or her
disability, which may cause worrying, sorrow and sometimes symptoms of
depression.

Case: Hannah
Hannah was born deaf and received a CI when she was about one year old.
Hannah’s spoken language developed fairly quickly. She is very active and loves
playing ball and other physical activities.
However, when she started school her language development was not age-
appropriate, resulting in her being referred to a special school for children with
hearing impairment. At school they were uncertain about her skills and her language
development, mainly because she did not speak much. Yet, in a network for children
with sight and hearing difficulties, she spoke a lot. At the age of ten she became
very introverted and seemed worryingly sad. She sometimes reacted angrily and
violently. She lashed out at other children and threw large objects, like computers
and chairs.
At the age of 12 she was referred to a psychiatric ward for children assessed for
ADHD or autism.
Hannah had none of these conditions, but signs of depression were found,
suggesting that her violent outbursts were caused by her own insistence as being a
clever girl. The cause of her behavior was the chaos she experienced as a
consequence of Usher Syndrome. This is rather common.

Intervention for children with Usher Syndrome between 7 and 14

Parents and professionals are responsible for guiding children from this age group
into passable landscapes; providing them with the support they need in order to
prevent chaotic situations happening and to develop into competent and problem
solving human beings.
The child must learn to understand and express his/her thoughts and feelings,
including when situations are difficult. It is crucial to support the child in building
good self-esteem and not try to shield the child from the pain caused by knowing
his/her situation.
It is recommended that the child participate in types of physical activity where he/she
can excel. A strong body can compensate for vestibular difficulties and for possible
obesity, tensions and stiffness caused by reduced functions of the body. Ball play
rarely works with this age group, while outdoor life, tandem biking, climbing, riding,
swimming and yoga are better suited.
During the early years of school the child must learn to use such assistive
technology as lamps for the visually impaired, optics for the visually impaired, and
tele-loop. It may also be necessary to introduce sighted guide techniques.

Young people with Usher Syndrome

When the young person is about 14 to 15 years old it is important to consider his/her
future opportunities. What does the young person want for him/herself? It can be
difficult to want something if you do not understand your situation; everything is
chaotic, and you only see limitations. Therefore, conversations and sincere
explanations are crucial. It is important to be both realistic; but not to be limited by
what you think is possible or impossible. It may be possible. We know people with
Usher Syndrome who are highly educated, have started a family, have travelled
around the world and have performed extreme athletic feats.
It is important for the young person to be in the company of other young people, who
are in a similar situation. The young person needs to learn how to express their
needs.
Is it still possible for young people in this age group, who are unhappy, to be guided
into passable landscapes? Is it possible to reverse a development which is ruining
the young person’s self-esteem and prospects for the future? I will now tell you
about Kevin, who succeeded in doing just so.

Case: Kevin
I met Kevin at a school for deaf children in Tallinn, Estonia. He was 16 years old and
the only one with Usher Syndrome at the school. I participated in a meeting with his
teachers and his mother, where they told me that Kevin had Usher Syndrome, but
that this was not his biggest problem. “What is Kevin’s biggest problem?” I asked.
The answers were varied: “He’s not social”; “he doesn’t understand what’s going on
in lectures”; “he doesn’t want to learn”; “he spends too much time at home with his
mother”; “he has difficulties concentrating”; “he is immature”; “maybe he’s autistic”;
“he doesn’t understand what Usher Syndrome is”, etc.
Then I met Kevin. He was a kind and polite young man who would not talk about his
disability. He attended a class where I was pleased to find that the lighting was
good; he was in the right place in terms of being able to see both his teachers and
the blackboard. Nevertheless, I could tell how much it challenged him when the
teaching took place as a discussion between the teacher and the students. He could
not see what they said.
At my next visit to the school I invited Kevin to a meeting with his primary teacher,
his mother, a sign language interpreter and an Estonian interpreter. I explained to
Kevin that I would like to show everyone how this disease affects his vision and
asked if he would help me.
In the beginning he sat a bit away from the table, a bit sullen, only cutting in to say
when something did not apply to him. However, he soon took over the meeting and
explained how he could see right ahead but not peripherally, and how his sight was
functioning in the dark, and how difficult it was for him.
He told us that the teachers sometimes asked him to do things he could not do
because of his visual impairment, and he explained that the eye specialist had told
him that it would get worse. He reflected on what he might do as an adult and
reasoned that he, at any rate, would be able to put products on the shelves in the
supermarket. At the end of the meeting he asked whether he could borrow my
materials, because he wanted to tell his classmates and other teachers about his
visual impairment. Of course this was no problem, and then Kevin slumped on the
table after his enormous effort. When I looked at his mother she looked at him
proudly, with tears in her eyes.
When I visited the school one last time, Kevin had given a little talk for his
classmates. I had another meeting with Kevin’s mother and teachers, and now
everybody agreed that Kevin’s problems were due to Usher Syndrome.
Kevin told me he had met two grown up men with Usher Syndrome. He had been
provided with a mobile phone, so he was able to contact his mother, if he got into
trouble when he went out with his friends.
Kevin’s story could just as well have taken place in Denmark.
Intervention for children and young people with Usher Syndrome between 14 and 18
When the young person with Usher Syndrome is between 14 and 18 it is important
to equip him/her with the ability to find the way into passable landscapes in life; help
him/her to develop an extended understanding of his/her disability, developing an
understanding of the syndrome and the interplay between the senses and the body.
It is also important that the young person is supported in understanding the
significance of using assistive technology when necessary. The young person must
be introduced to new technology to create a worldwide network. It may be useful for
a future career, when you have such a rare disability.
In addition to this, the young person must also learn to understand the essence of
energy loss, know his or her strengths and the limitations inherent in the disability.
The young person must learn to know and manage symptoms of stress. The young
person should know the consequences if he/she does not stay in shape or is
physically active.
Parents and professionals can support the young person to stay in shape in order to
compensate for the losses of senses and the dysfunctions of the body. Finally the
young person must have support to find and participate in relevant networks.

Summary
People with Usher Syndrome have difficulties integrating their senses and body in
relation to each other, their relations and the world around them. They experience
these difficulties every day, every minute, all through life, and it influences their
possibilities to participate in relations and take part in society around them. Since
these individuals seem to constantly face difficult situations, they need support and
self knowledge to be able to revert to passable contexts.
People with Usher Syndrome need to understand their difficulties in the light of their
multiple loss of senses, including balance and vestibular difficulties, shifting and
progressing difficulties with sight, reduced hearing and the use of CI and other
assistive technology. They need to understand what it is like to experience extreme
losses of energy because of the sensory overload.
They need to learn strategies to be able to move forward in spite of these barriers.
They need to understand themselves in the light of the many, long and dire
struggles they will face during their life; including understanding what they will miss
out on, when everything demands their time and energy.
It is crucial that parents and professionals are there to support and help people with
Usher Syndrome their whole life. It is important that people around the person with
Usher Syndrome understand, or try to understand that deafblindness is a
circumstance that changes in the different situations in life. They need people
around them who can communicate this in a problem solving and productive
manner.
Deaf-blindness is in itself not part of the person, but a circumstance which stands
between the person, his/her relations and the surrounding world – exactly like the
snow that fell between me and the rest of the world.
References
Dammeyer, Jesper. Children with Usher Syndrome: mental and behavioral
disorders. Behav Brain Funct1 2012, 8:16
Dammeyer, Jesper. Development and charactaristics of children with Usher
syndrome and CHARGE syndrome. Int J Pediatr Otorhinolaryngolog.2012 Sep;
76(9)

The article was published in Danish in January 2013 by The National Board of
Social Services (http://www.socialstyrelsen.dk). The translation was published March
2013.

Copying is permitted under the criteria of fair use and with specific reference to the
source.
1
Behavioral and Brain Functions is an open access, peer-reviewed, online journal
that encompasses all aspects of neurobiology where the unifying theme is behavior
or behavioral dysfunction. www.behavioralandbrainfunctions.com

Network News

Acquired Deafblindness Network

Liz Duncan
Email: [email protected]
Website: www.adbn.org
CHARGE Network
Andrea Wanka
Tel: ++496251939797
Fax: +4916090309876
Email: [email protected]
Communication Network
Ton Visser
Email: [email protected]
Employment Network
Diana Bonilla Sinibaldi
Tel: +(502) 52089291
Fax: (502) 24347934
Email: [email protected]
EDbN
Ricard Lopez Manzano
Tel: +34-678-712-619
Fax: +34-678-782-600
Email: [email protected]
Website: www.edbn.org
Latin America Network
Sandra Polti
ARGENTINA
Email: [email protected]
Outdoor Network
Joe Gibson
Tel: 4+4 (141) 429-0294
Email: [email protected]
Rubella Network
Network contact to be determined
Email: [email protected]
Siblings Network
Sabine Kersten
Tel: +32 476 612 879
Email: [email protected]
Social-Haptic Communication Network
Dr. Riitta Lahtinen & Russ Palmer
Tel: + 358 40 522 4201
Email: [email protected]; [email protected]
Tactile Communication
Working Group
Bernadette Van den Tillaart
Tel: +1-740-426-6728
Fax: +1-740-426-6728
Email: [email protected]
Usher Study Group
Emma Boswell
Email: [email protected]

Acquired Deafblind Network (ADBN)

Liz Duncan reports:

With the conference in Lund Sweden, now a memory, the coordinating group and
the new local planning team are now hard at work on the next Conference planned
for Belfast Northern Ireland, November 2014.
The coordinating group met back in February to evaluate the Swedish conference
and begin planning the Belfast conference.
As always, the evaluation from delegates was extremely useful (a big thank you to
everyone who took the time to give us their views and comments) and as a result,
we have made some changes to the format of the programme for Belfast.
We also have our theme for the conference, ‘Life, Love and Laughter’ which was
suggested by one of the delegates in Sweden. The coordinating group felt that the
theme offered the opportunity for some new and hopefully innovative plenaries,
workshops and ways of sharing our experiences.
Some of you may have used the ADbN website in the past. This has now closed and
the content will be moving over to the DbI website soon. This will make it easier for
people to access the network and will also mean that it’s much easier for people to
network with each other, right across the world. If you have any comments about
this, or suggestions for new content, then please do get in touch with me.
And in August, there will be the DbI European Conference in Lille, France. ADbN will
be running a network event during the Conference, which promises lots of thought-
provoking discussions, so if you are attending the Conference, please do come and
join us.

Liz Duncan
Email: [email protected]

Deafblind International (DbI) preconference on

CHARGE Syndrome
August 24 2013
Lille France
The preconference from the DbI CHARGE Network (www.dbicharge.org) will be held
on August 24, 2013 in advance of the 8th DbI European Conference in Lille/France,
at the Ibis Hotel Lille Centre Gares (29 avenue Charles Saint-Venant, 59000 Lille,
France) (a ten minute walk from the Grand Palais, location of the main conference).
There will be two main topics we are going to present, reflect and discuss in depth:
Social-Emotional Skills and Communication

No Time Programme
.
08:30-
1 Coming together and enjoying the exhibition of photos!
9:00

9:00- SOCIAL-EMOTIONAL SKILLS – presentations

2
10:30 (speaker 1: Sonja Friberg, speaker 2: Gail Deuce)

3 10:30- Morning coffee break: Time for sharing

11:00
11:00- SOCIAL-EMOTIONAL SKILLS – discussion and feedback
4
12:30 (facilitators: Sonja Friberg, Gail Deuce, Andrea Wanka)
5 12:30- Lunch
6 13:15
13:15- COMMUNICATION – presentations (speaker 1: Steve Rose,
7 14:45
14:45- speaker 2:coffee
Afternoon Andrea Wanka)
break and time for registration
15:30
15:30- COMMUNICATION – discussion and feedback
8
17:00 (facilitators: Steve Rose, Andrea Wanka, Odette Haubrich)

In addition to the program we plan to have three interactive walls, where the
attending people can collect and share ideas. One will be a collection of important
topics to be discussed in the forum on the website of the DbI CHARGE Network
(www.dbicharge.org). One on personal reflection of your work in the field of
CHARGE Syndrome, and one white wall, open for every idea which comes up
during this intensive day of sharing knowledge, ideas and questions.
In addition to the walls there will be a small exhibition of photos taken of children,
youths and young adults with CHARGE Syndrome by the German photographer
Robert Bühler (www.robertbuehler.com).
The preconference cost is Ä75 which includes the venue, two coffee breaks and
lunch.
The conference application form can be downloaded from http://www.dbilille2013.eu/
and send to [email protected]

CHARGE Network Meeting Announced:

On Wednesday August 28th from 9 until 11:45 during the Lille Conference, the
Network will host an open discussion Network group meeting. Everyone is welcome.
In addition to topics that might be suggested during the preconference, Network
members or others can send topics for discussion to [email protected]

European Deafblind Network (EDbN)

Ricard Lopez reports:

Recently EDbN has celebrated two important successes. The first one was the
constitution of the European Platform of Deafness, Hard of Hearing and
Deafblindness. The Memorandum of Understanding (MOU) was signed in
Copenhagen, on the 26th of May 2012 during the General Assembly of the
European Disability Forum (EDF).
The platform, which represents 80 million Europeans, has been formed to enhance,
strengthen, and cultivate a robust and enduring collaboration between the 5 most
important European NGOs working on Deafness and Deafblindness: the European
Cochlear Implant Users (EURO-CIU), the European Deafblind Network (EDbN), the
European Federation of Hard of Hearing People (EFHOH), the European Federation
of Parents of Hearing Impaired Children (FEPEDA), and the European Union of the
Deaf (EUD), for the express purpose of benefiting Deaf people (including Sign
Language users), Hard of Hearing people, Deafened people, and Deafblind people
and their families regardless of the language, the communication system or the
assistive technologies they use (hearing aids and cochlear implants). We aim to
strengthen the EU 2020 strategy and the EU Disability Strategy with regard to full
and equal participation in society. The first activity of the platform consisted of a
conference in Brussels; you can read a summary of it in this magazine.
A second success is the project European Deafblind Indicators
(www.deafblindindicators.eu). This project aims at creating a Common European
Framework for the assessment of institutional models of care for deafblind people
based on indicators created ex novo: the Indicators of Deafblindness Equality in
Europe (IDBEE). Its importance lies in the fact that great differences in the degree of
attention exist among the various European States. The data collection through
these indicators, including the various partial publications that have been issued by
some organisations, should enable the detection of best practices on a European
level and recommendations on the design of models of care in this field.
This Partnership seeks to bring together 14 of the most important organisations
working for deafblindness in Europe. The 13 participating European States (Spain,
United Kingdom, Denmark, France, Portugal, Romania, Hungary, HR, Netherlands,
Lithuania, Austria, Finland and Slovakia) represent the majority of the most
advanced countries in the world that treat people with deafblindness.
Presently we are setting up a new project within the Comenius-Regio Partnership
program of the European Union with the aim of reinforcing specifically the good
practices in the educative stage (up until 16 years old) and also the European
Deafblind Indicators project, making possible the publication of the book with the
conclusions and results.
Regarding the European Disability Forum (EDF), as EdbN we are part of different
groups of experts: Structural Funds, New Technologies, New Accessibility Law, etc.
Due to the fact that these topics may cast a great influence on future policies in the
European Union we ask all EdbN member organisations to consider identifying
some expert professionals on these topics in order to work towards a common
position taking advantage of the excellent synergies we have developed with EDF
during the last years.
Finally, regarding the 8th DbI European Conference in Lille, EdbN wishes to assume
an important role organising a pre-conference activity on the Saturday 24th of
August and presenting an official talk about the European Deafblind Indicators
project. Please, keep an eye to this via the EdbN website www.edbn.org.
It is a good time for the organisations that are still not part of EdbN to ask to be
members.
Mind the Data Gap! Lack of statistics for an effective EU inclusion
strategy?!

The very first activity carried out by the European Platform of Deafness, Hard of
Hearing and Deafblindness has been the organization of a conference on the 15th of
November 2012 in Brussels with the following headline: Mind the Data Gap! Lack of
Statistics for an effective EU inclusion strategy?!
The aim was to explain to the European Institutions the difficulties that exist trying to
find high quality statistical data on specific hearing disabilities and the problems that
arise from that, especially when it comes to policy-making.
In their welcome speeches, Ádám Kósa, president of the Disability Intergroup in the
European Parlia¬ment, and Yannis Vardakastanis, president of the European
Disability Forum, highlighted the importance of projects like this Platform, a united
voice for all people with hearing disabilities.
Lucy Drescher, from EDbN, called for quantitative and qualitative data about specific
disabilities. The Platform would like to see questions about disabilities included in
the national censuses of the Member States of the European Union and also in
relevant European surveys. Asking the right questions is the key to getting useful
statistics.
“If you combine the different data of our organizations, there are 80 million people
with a hearing disability of some kind in Europe”, stated Mark Wheatley, from EUD.
This is roughly equal to the population of Germany.
The Eurostat Representative, Bart de Norre, explained the different statistical
studies that are carried out about social aspects of people’s lives and the financial
difficulties to have these kind of questions asked through Eurostat.
Organisations such as the Platform are not the usual sources of experts for these
institutions “It is very rare to have direct contact with platforms like yours. Almost all
experts consulted come from national agencies or the European Commission DG
Justice, not disabled people or their representatives of NGOs.” Unofficial EC sources
claimed.
“People with disabilities are one of the most vulnerable parts of the working force,
they are often unskilled, because they have three times fewer opportunities to
continue learning and training themselves” stated Lázlo Gábor Lovászy, member of
the United Nations Committee on the Rights of Persons with Disabilities.
Stephanos Grammenos, member of the Academic Network of European Disability
Experts, indicated that: “8% of European Citizens state that they are disabled; 5%
receive some kind of financial help. Furthermore, 37% of people with disabilities are
in risk of poverty. This can be compared to the 22% of people without disabilities
who are in the same risk.”
The Platform would like to encourage the European Commission to work towards
harmonisation of the 27 Member States on the issues of statistics on disability.
The conference had as guests representatives of the five most important European
political groups, Commission Officers and representatives of other important
European Institutions.
The European Platform of Deafness, Hard of Hearing and Deafblindness is a Young
Alliance between five European NGO’s dedicated to the whole collective of people
with Hearing Disabilities coming from very different perspectives. (European
Association of Cochlear Implant Users, European Deafblind Network, European
Federation of Hard of Hearing, European Federation of Parents of Hearing Impaired
Children, European Union of the Deaf).

Ricard Lopez
[email protected]

Kick-off meeting in Glasgow of the Project “European Deafblind

Indicators”

The experts in deafblindness from around Europe, who held their first meeting in
Glasgow on the 19th and 20th of November 2012, started off this two-year project
granted by the Grundtvig Programme of the European Commission. The meeting
joined the nine official organisations of the project, coming from eight EU Member
States (United Kingdom contributes two organisations), gracefully hosted by Sense
Scotland in Glasgow, placing their facilities at the disposal of the 25 participants,
who had the chance to visit their centres and services.
In an amiable atmosphere, the different project tasks were assigned to the attending
organisations, including the workgroups regarding the Deafblindness domains that
need to be worked on. The domains that have been established are the following:
disability rate/demographics, personal and family life, choice and control, access to
goods and services, education and lifelong learning, work and employment, and last
but not least, incomes and poverty. Other working groups were approved as for
instance; Standards for services; Generation of statistics and comparative graphics
and Contact group for non-official and new entities.
During the seminar, the concept of “European Deafblind Indicators” was also
approved as the main defining concept of the project, which will also be used to
name both the website (www.deafblindindicators.eu) and the final book, which will
include the concluding data collected during the two years of investigation. It was
agreed that the results will be presented at a hearing in the European Parliament
and in a final seminar in Barcelona. Both events to be held in 2014.
The presence of the most notable organisations within the field of deafblindness in
their respective countries will guarantee the quality of the results; nevertheless, the
members agreed on an enlargement policy to keep the organisations from the five
European countries that did not receive funding within the project, as well as other
European countries wishing to join this challenging enterprise.
If you or your organization are interested in being part of this project please let me
know [email protected]

Some interesting Information:

www.edbn.org EDbN website
www.deafblindindicators.eu Project website
www.deafblindindicators.eu/index.php/aboutus Partners of the Project

Ricard Lopez
[email protected]

Social-Haptic Communication Network

Riitta Lahtinen and Russ Palmer report:

The Social-Haptic Network is collaborating with the “Signo” organization in Norway.

After a one-day professional meeting and teaching day, Signo organised a six-day
social-haptic communication course during 2013. The tailor made programme for the
professionals working at Signo was developed according to three levels: Basic,
Intermediate and Advanced. These different levels included basic concepts on
social-haptics and haptemes (grammar), which allow the opportunity to exchange
ideas and practical tips on how to apply haptices (touch messages onto the body)
with different client groups. During the learning process the students are able to
discuss with the teachers specific related issues in applying these methods through
skype or email.
Co-operation with Royal Association for the Deaf in the UK and Royal Dutch Kentalis
in The Netherlands gave the opportunity for the professionals, interpreters, deafblind
people and family members to work together in a one day workshop to discuss and
share experiences on how social-haptic communication can be used in everyday
life.
The Finnish National Board of Education has accepted the Instructor of Haptics skills
level course as a part of the Special Vocational Qualification instructor’s curriculum
of Visual Impairment skills at Keskuspuisto Vocational College Helsinki in Finland.
Other special instructor areas include educational disciplines from low vision and
mobility training, IT and Braille for the blind. This pilot research project course was
started in January 2013 and sets the standards for the process to learn and use
haptices with blind and deafblind people.
KELA, the Social insurance institution in Finland (Governmental Social Services
Department), has recognised haptices as an official communication system for
deafblind, visually and hearing impaired people.
Trainee students and qualified Sign Language Interpreters who wish to specialise
working with deafblind people, now have the opportunity to do extra studies of 3
credit points (78 hours work) courses on social-haptics.
Research and development projects with Turku and Helsinki Universities and
professionals are continuing during 2013 in the areas of musical haptices. Helsinki
University is focusing on the area of haptices and multi-perceptional learning.
The second Social-Haptic Communication Network meeting is taking place during
the International Accessibility and Multimodality in Communication symposium at
Turku University.

More information and subject related abstracts can be found on the website
(http://tucs.fi/conferences/acmuc2013/)

Tactile Communication Network

Bernadette Van Den Tillaart reports:

Over the years, the Tactile Communication Group has had many network
opportunities, in different continents and with different organizations.
This past February we were invited by the Deafblind Project from the Texas School
for the Blind and Visually Impaired (TSBVI) and Texas Tech University to speak at
the ‘2013 Texas Deafblind Symposium’ in the United States. 300 participants, from
inside and outside the state of Texas, attended both the presentations at the
opening and last day of the conference. Many participated in the lively and involved
discussion about experiencing the world from a tactual perspective and its impact on
communication.
Many parents (approximately 80) were among the audience and their examples and
ideas supported the presentation through sharing. The Daley family showed in their
own presentation why the children with deafblindness need tactile communication
and tactile access; making the case for intervenors.
Some of the participants started work during the rubella epidemic period and are
current members of DbI. Because we presented as the DbI Tactile Communication
Network, younger participants (everybody under retirement age!) became interested
in Deafblind International as well.
In addition, we presented a 2-day training seminar with the TSBVI school and
outreach program teams, involving video examples of their students. This connected
the conference information and discussions directly with the students they were
familiar with.
We appreciated the opportunity to share with and learn from so many colleagues
across the United States. People asked us how they could participate in this group.
Like the other networks, each or every other year the Tactile Communication Group
has had activities to share findings and ideas, with colleagues at different places in
the world. This has led to initiatives amongst people, changes in perspective, and
connections with our group. Their ideas and findings support our work, and we try to
give back to the wider deafblind community through those activities and by providing
access to the movie and companion guide.
This question of network participation is important. Being part of such a global
organization as DbI, focusing on a relatively small population, how can DbI networks
be true networks? Or maybe the question should be turned around. What do we
mean by a ‘network’? Does it mean providing physical meetings beyond the
conferences? Does a network share digital information? Does a network include
activities such as performed by the Tactile Communication Group? Most networks
have a small core group. If a network would want to welcome many members, what
can they offer? What do we mean when we say: a network member? Does a
network member need to register; but then, what does that provide differently than
the open access to resources from the webpage? What can be expected of a
network with the current website possibilities? How can we connect with colleagues
in the field, beyond our own ‘local’ (travel) circle? We welcome ideas regarding this
discussion.
The Tactile Communication Group will present at the DbI European Conference
Network Day in Lille. This will include the sharing of the film ‘Landscape of Touch’.
The Tactile Communication Group and the Communication Group will join forces
during the morning of the Network Day.
We are in the process of updating our webpage. We will provide information on how
to order the film. We also will share with the webpage visitors other resources
related to tactile communication.

To find information about ordering the DVD ‘Landscape of Touch’, go to the website
of Deafblind International, click on Networks and click on Tactile Communication
Network. http://www.deafblindinternational.org/network_tcwg.html

Proposal for a Deafblind Youth Network

Proposals for a new youth network have recently been submitted to the DbI
management committee. The network aims to provide a collective international
platform from which young Deafblind people will inspire others, share views, develop
ideas and influence policy makers. There will also be a strong emphasis on
developing and sustaining friendships through participation in a range of engaging
and fulfilling international activities. This will promote and value the positive
contribution that young Deafblind people make in their communities and respective
countries.
The proposed network identifies that youth transitioning from childhood to adulthood
are entering a very important stage of life. Membership of this network would provide
opportunities to nurture Deafblind young people to express their aspirations and
goals for the future. A young person with the developed confidence and ability to
represent themselves and others at an international level will be a huge asset to
their respective Deafblind organization.
Initially the proposed network would bring together potential members through social
media including forums and discussion groups. This will gauge interest in the
network and enable active input of each potential member.
Responsibilities within the network would be be allocated among the young people
ensuring a sense of ownership among members. The planning of future activities
would be in response to the suggestions of the young people. These may include
exchange visits, network holidays and participation in Deafblind International
conferences.
Deafblind Youth Network is the shared idea of Alan Avis and Simon Allison, both of
whom are experienced in youth work through their roles within Sense. Simon
explains the inspiration behind the new network,
“The network will be built around creating fun experiences that celebrate and
champion young deafblind people throughout the world. We want to unite the next
generation of young deafblind people supporting them to protect their civil rights and
maximize the equalization of opportunities in all aspects of life”.
The proposals for the new network have already been shared with some young
Deafblind people. The responses clearly demonstrate both the enthusiasm and a
need for such a group.
“I am very interested in the idea of a network for young Deafblind
people. It would give me the fantastic opportunity to learn about new cultures and
make friends with other Deafblind young people worldwide”
Snædís Rán Hjartardóttir (Iceland)
“I would really like to participate in the Deafblind Youth Network.
I have a strong interest and desire for international work. I love the feeling of
inspiring others in foreign countries outside of the USA to have hope and strength”.
Corrina Veesart (California)

For further information on how you can become involved in supporting the new
Deafblind youth network please contact [email protected] or
[email protected]

Correction
From Dawn M. Guthrie, PhD
Associate Professor
Dept. of Kinesiology and Physical Education, Laurier University.

Dear Stan,
I am enclosing the attached statement to update and correct my article that was
published in the Jan 2013 edition of DbI Review (pages 66-67).

“At the time of publication, Project 3 was finished (completed in June 2010) and
further pilot testing of the instrument was conducted with 135 clients as well as one-
on-one interviews with 8 clients and 6 parents.
The article also incorrectly stated that the Ministry of Community and Social Services
(MCSS) was moving ahead with implementation of this assessment tool. MCSS has
not finalized an assessment process or funding model for adults who are deafblind”.

The Napoleon’s Code…

in Europe1!
…or the medical, societal and psychological situation for elderly with acquired
hearing and vision loss

In France, we are still registered through the Napoleon’s Code, which in 1804 unified
the entire country under the same civil laws with the same rules for all the French
population from birth to death.
Since, then of course most of the laws have been modified in relation with the
evolution of our population’s way of life. However, regarding the elderly throughout
Europe, when they lose their autonomy through sensory disabilities, they look on
themselves as they were looked upon in the 1960’s as people not useful to society.
We are now trying to understand why this growing elderly group with dual sensory
impairment (DSI) is not recognized as a distinct population group in France or even
in Sweden and the Netherlands, countries well-known for their ‘avant-garde’ social
welfare programs. Is Napoleon’s ghost still wandering in Europe as an expanding
cloud creating a European partially sighted and partially deaf population in spite of
new knowledge in medical research?

Medical situations observed with elderly DSI

As a matter of fact, recent research from the Pasteur Institute2 focussing on ‘genes,
perception and cognition’ indicated that our brain never stops producing new
neurons. This is done mainly in two locations - the olfactory and spatial memory
structures. This recently understood human cerebral plasticity is not dependant upon
the level of our knowledge, education or professional responsibilities but instead
through our capacity to discover and understand new things.
For example, during visual re-education and stimulation activities, the patient uses
his brain plasticity to reorganise new retinal fixation areas, new ocular motor
pathways and new eye movement activities. Having accomplished that, he becomes
able to use optical aids to read (and even write) through these new cerebral
automatic responses; even to understand the meaning what he is reading.
So the elderly are still able to use and train their attention, memory and new visual
capacities at any age, for any visual competency or visual acuity. However, these
treatments are most of the time the only ones for AMD (Age related Macular
Degeneration),retinite and hemianoptia3 because of the lack of other medical or
surgical solutions.
Through my own experience, I have, for many years, noticed that most
ophthalmologists in France fail to prescribe these low vision rehabilitation
programmes as systematic treatments Two main reasons could explain this failure:
• The first one could be explained by the fact that neuro-vision competencies do
not belong to the eye but to the brain; suggesting another specialist is required.
• The second one is the fact that a patient becoming old with DSI endures this
condition in silence and often in secret. Gradually, as the sensory loss increases,
this patient takes on a more depressive attitude. Consequently, the ophthalmologist
tends to judge that the person is unable to assume a visual rehabilitation program
because it’s too late!
But our study also demonstrates that in Sweden or in The Netherlands where visual
rehabilitation programmes are quickly available after the ophthalmologist diagnoses
AMD, and technical aids are offered through social services, people with DSI
continue to resistant to these benefits?
To conclude discussion about these observed medical situations, I strongly
recommend two points of advice to improve functional vision for elderly people with
dual acquired sensory impairment:

1) Improve their capacity to make adaptations to continually improve themselves

throughout their life. This means to regularly practice their cerebral capacity, not just
by focussing on past knowledge but always trying to discover and understand new
situations through a positive curiosity. Maintaining cerebral plasticity is easy when
one’s cognitive capacities are in a normal, regular and active way of life. Training is
easier for those who receive the bad news if one is still able to think with an open
adapting mind.

2) Don’t wait too long before too much of the vision is lost. Patients must join a
specific program of visual rehabilitation as soon as to train their existing (but
deteriorating) visual capacities while they are still able to read, and while they feel
they still have enthusiasm to find pleasure in experiencing life. We have to regard
this sensory loss as a new and natural change that one has to face, even if
professional help is necessary to cope with these changes.

Psychological, Social and Cultural aspects of elderly DSI

After the partial medical loss we have just observed, let’s further look at the
psychological, social and cultural impacts if we are to better understand the difficult
situation that newly diagnosed people with DSI face.
When life is progressing as normal, with no particular health problems, elderly
peoples way of life today can be described as positive, strong and active. They
practice various sporting activities, wear fashionable and colourful clothes, travel,
attend university and they fight for their recognition within the “cult of youth”.
But why should a disease, particularly visual deterioration, destroy a person’s stable
self-image? Why does it become such a nightmare to the point of weakening their
self-esteem? I suggest three different situations that I encountered in my clinician
practice:
a) Vision loss for most European people is synonymous with fear, darkness and
death. “This is the end mentality! I have lost my autonomy and thinking capacities”.
These strong negative representations belong to our European ‘collective
subconscious’ related to a past time when blind people were rejected from society
and considered ‘mentally dangerous and weak’. This negative picture of oneself
even worsens with their personal distress, as they look upon themselves ‘as a door
they refuse to open’!

b) This negative picture, reinforced through a negative visual prognosis together

with the feeling of abandonment by the medical community, leads to a type of
psychological trauma. I say trauma because the new realization of now having a low
vision capacity, unable to rely on their vision, creates a real challenge to be able to
think in a new future direction.
Why then is that person in danger of not thinking positively about their life ever
again? They are thinking: “How could the youth cult have disappeared from me so
quickly?” The reason, at this point in their trauma, is that ‘their new fashionable
positive elderly life model’ has now been replaced by a weaker inner representation
model. A bad vision of their grandparents, often characterized with blindness and
dementia, appears to them.
Developing this new ‘ancestral attitude’ for the visually impaired elderly person is a
very dangerous approach for their own future. Unfortunately, it appears much easier
when one feels lost and without any more fighting energy, to simply give up and
remember the past, than to take an unknown direction. Simply stated, the final life
project and philosophical way of life has regressed now to become a passive
acceptation of what has happened as the normal destiny with old age!
3) After this trauma and psychological consequence, let’s look at the third point
as the social impact of the situation with DSI. I am now talking about the perceived
negative image of having to pay for and use various visual and hearing aids to be
like ‘before’.
I spoke earlier about the cult of youth and the modern characteristics of the senior
population. Further to previous discussions when sensory disabilities develop, my
question now is whether it is fashionable or not for the ‘modern senior’ to wear
technical aids? Who is proud to show everyone that they are wearing an obvious
‘aging device’? Why colour your white hairs if at the same time you need to wear
visible, unattractive and often ineffective technical aids? Why do the French
population pay a ‘fortune’ for such a difficult and personally unsatisfying system?
So, without professional support and advice, some people see more negative points
than benefits and develop a bad self-image, forgetting the real advantages of
professional and technical support.

Conclusion
To conclude I hope this paper will convince the technical aid industry that the
potential 2 to 3 millions of people in Europe with dual sensory impairment is
recognized as a real future market opportunity which requires positive publicity.
Effective real life positive TV stories about seniors improving their lives through
these aids should help convince future clients that the necessity of living with
technical aids is a new European norm.
And as with Napoleon and the French civil code, I hope politicians of the European
parliament will support such necessary projects through public health legislation and
funding to promote information about these real needs among a rapidly growing
population. So satisfied with a continuing good self-image, with effective training in
the use of such aids, and purchased at lower prices, dual sensory impaired seniors
will look favourably to their future again.

Christine Aktouche
(Orthoptist, Neuropsychologist and Psychogerontologist)
Bordeaux and Poitiers, France
Email: [email protected]
1
Paper presented at 8th ADbN Conference in Lund, Sweden, November 7-10, 2012
2
www.pasteur.fr
3
Defective vision or blindness in half of the visual field of one or both eyes…from
www.wikipedia

Using the UK system of vocational training to shape the workforce

supporting deafblind people
There are 1.8 million workers in Health and Social Care in the UK. Work carried out
by Sense and other organisations in the UK has meant that they can now all access
qualifications that help them develop their skills and knowledge about
deafblindness. This article explores what we did and asks whether there is value in
DbI members sharing their experiences of vocational training frameworks so that we
can learn together.

Introduction
Historically, the UK adult health and social care workforce has never been required
to learn about deafblindness as part of their core training. For workers in the field of
deafblindness there has been no strategy by the UK workforce regulators to support
them in the development of the necessary specialist skills and knowledge.
Sense has worked tirelessly over the last decade to influence workforce
development policy makers in order to redress this. The landscape in 2013 is quite
different. For the first time, all of those 1.8 million workers have the chance to
develop skills and knowledge about deafblindness as part of their vocational training
programme.

How did we do it?

It took a long time and many many meetings to persuade policy makers that
deafblindness should be recognised in the mix of skills and knowledge social care
workers need. We campaigned for about 5 years before we even got as far as
getting this recognition. We didn’t work alone – we collaborated with a number of
other voluntary sector agencies so that our voice was stronger. We had to repeat
our messages over and over again before we succeeded in getting recognition.
Finally we managed to get agreement that the new UK vocational framework would
include a sensory disability pathway. All we had to do was the work! Sense was
commissioned to write materials and they were incorporated into health and social
care qualifications from 2012.

What did we develop?

We developed a suite of modules at levels for direct support staff, managers and
specialist workers that addressed the main functions carried out by a person working
in health and social care supporting someone who was D/deaf, blind or deafblind.
These formed part of the main health and social care qualification requirement for all
workers.

Specifically we developed materials and standards about:

• Understanding sensory disability
• Supporting individuals with communication
• Supporting people to move around
• Accessing education, training and employment
• Models of disability
• Multiple disability and conditions
• Using assistive technology
• Assessing individuals
• Promoting awareness of sensory disability
However this didn’t go far enough and we wanted to be able to offer a specialist
qualification to workers who didn’t need to do the health and social care general
qualifications but did need access to a more specialist pathway so we developed a
suite of modules that became a specialist qualification in its own right at under
graduate level.
This new qualification is available to any individual wishing to develop their skills and
knowledge in our field. It is made up of mandatory and optional units. All of the units
in the generic qualification are included plus:
• Supporting people with independent advocacy
• Supporting people with housing choices
• The anatomy, physiology, pathology and demographics of sensory disability
• Using policy, legislation and guidance to secure services
• Supporting people with technical and medical interventions
• How children and young people develop
• Understanding Deaf culture
• Supporting individuals with well being and mental health
• Your professional practice
So you will see that this list of units provides the worker with a comprehensive set of
options in order to develop the skills and knowledge they are likely to need in order
to support someone with a sensory disability.

How is our work being used?

Our work is being used by deafblind people, learners, employers, awarding bodies
and sector skills councils to bring about an increase in the skills and knowledge
levels of the workforce. So far the units are too new for us to be able to know how
many people have undertaken them. But in Wales and Northern Ireland the unit on
understanding sensory disability is compulsory to all workers so we can assume that
the reach will be quite significant in these countries.

What else is available?

Of course these aren’t the only qualifications available to workers supporting
deafblind people. Several academic options are available to the workforce including
the Certificate and Diploma in Deafblind Studies recognised by the Open University,
our programme for intervenors, recognised by the University of Northampton and the
Multi Sensory Impairment programme at the University of Birmingham.

With the qualifications we have developed for the health and social care workforce
and the academic qualifications available to the general public, we now have a rich
package of options for our workforce, but we can always do more. What can we
learn from each other across the international community?

Is there value in shared discussion?

I think there are some useful questions we could explore together across the DbI
community
• How do other members of the DbI community develop vocational skills and
knowledge in their workforce?
• What opportunities are there for collaborative working across the DbI
community to strengthen the range of options on offer to the workforce?
• Can the experiences of Sense provide any helpful pointers for other nations?

This is a subject close to my heart. I would be really keen to hear from anyone who
is interested in exploring some of these issues together.

Alison Bennett
Head of Staff Development ([email protected])
Sense UK (www.sense.org.uk)
Speech-to-Braille interpreting for hearing and visually impaired and
deafblind people using JAWS software

The SNAB advice centres for hearing and visually impaired and deafblind people,
working together with Accesstech AG in Lucerne, have developed a speech-to-
Braille interpreting system for deafblind people using JAWS software
The adaptation of Braille to computer technology has existed some time. But until
now, it was only possible to write and read at the same position in the text. Anyone
who in the past relied on: a) having detailed information or even whole presentations
in spoken language in spite of their being hard of hearing, b) sign-language in spite
of their visual impairment, c) spelling out on their hand using the Lorm alphabet can
now read the information from a Braille display .
A companion, communication assistant or speech-to-text interpreter is still needed to
type the spoken information into a file on a Personal Computer.
The hearing and visually impaired or deafblind person can read the information at
their leisure using the Braille line. Two people can read or write at different speeds
and start at different points in the text.
For hearing and visually impaired or deafblind Braille readers, the information is
presented in full Braille. Numbers can be reproduced in computer Braille and simple
groups of letters can be abbreviated.

Requirements:
- Laptop with Windows XP, Vista, 7 or 8
- Microsoft Word 2003, 2007, 2010 or 2013
- JAWS Version 10 to 14 with a Braille display installed
- Accesstech JAWS add-on Version 1.20 or higher
(www.accesstech.ch/atjaws.exe)
- This add-on is integrated into the latest version of JAWS.
Hearing and visually impaired or deafblind people must provide their own hardware
and software when using this new technology at an event.
We are very pleased that this new technology will improve access to live, spoken
information for individuals with this disability.

Mäde Martha Müller ([email protected])

SZB/SNAB (www.szb.ch)
1
SNAB – Swiss National Association of and for the Blind - www.snab.ch
2
www.accesstech.ch
3
JAWS (Job Access With Speech) Talking software – www.jaw.it
4
LORM – Tactile sign language named after Hieronymus Lorm, pseudonym of
Austrian deafblind poet and novelist Heinrich Landesmann (1821-1902).
www.jewishvirtuallibrary.org
5
braille display or braille terminal is an electro-mechanical device for displaying
braille characters.
www.wikipedia
Mary Guest, founder of Sense’s Usher syndrome programme, has
passed away

Very sadly, Mary Guest passed away on Thursday 28 March, 2013. Mary is
remembered by many for her incredible commitment to people with Usher and their
families.
She joined Sense in 1983, launching an Usher Awareness and Education
Programme, and she never looked back.
The work that followed was rich and varied - supporting individuals and their
families, establishing international networks on Usher, running arts weekends,
setting up support groups, sending out newsletters, sharing new knowledge about
the Syndrome, putting together research projects, just to name a few activities.
Whatever she did, she did with a passion and she leaves behind a great legacy.

Gill Morbey, Sense’s CEO, remembers her contribution:

“Mary was a true professional championing her ‘cause’. She passionately supported
people with Usher syndrome, developing and leading research projects and
campaigning for services. She was an inspiration not just in the UK but
internationally.
I knew Mary over many years but one of my fondest memories was travelling to a
conference in Mississippi with her in the 1980’s. The population in that area have a
high incidence of people with usher syndrome and I spent most of the long haul
flight with Mary ‘lecturing’ me about usher, genetics and how in the future we could
at least stop the deterioration of sight. Her passion kept me engaged for hours. We
are now looking at stem cell research so I think Mary was well before her time.”

Secretariat News
Meetings
The DbI Management Committee met in Ahmedabad India in April for its first
meeting of 2013. Following the meeting, ManCom attended the 2nd Joint Asian
Conference of ICEVI & DbI. The conference was a wonderful event and the
relationship between DbI and ICEVI was further strengthened through the process of
collaboration. We take this opportunity to thank Akhil Paul and Biju Matthew from
Sense International India as well as Dr. Bhushan Punani of the Blind People’s
Association for their invaluable support in the lead up to our meetings and the
conference.

Conferences
2nd Joint Asian Conference of ICEVI & DbI
Congratulations to the International Council for Education of People with Visual
Impairment (ICEVI), Blind People’s Association (India) (BPA) and Sense
International (India) (SII) for hosting an outstanding conference in Ahmedabad,
Gujarat in April 2013. The theme of the conference was “Towards an Inclusive
Tomorrow”. Delegates from all over the world attended the event which added to the
diversity of discussions. DbI was very proud to be aligned with ICEVI on this
conference and looks forward to collaborating on future initiatives.

DbI European Conference 2013

The 8th DbI European Conference in Lille is taking shape and we commend the
hosts for the wonderful job they are doing in preparing for what is sure to be an
innovative and exciting conference. There is still time to register and we encourage
you to visit to conference website www.dbilille2013.eu to learn about the program,
topics, themes and pre-conference options.

DbI World Conference 2015

We are delighted that Sense International UK /Sense International (Romania) will
jointly host the 16th DbI World Conference on Deafblindness. The 2015 conference
will take place in Bucharest, Romania. While the timing has yet to be finalized, the
tentative dates are May 25-30, 2015. Hosting the conference in Central Europe will
raise awareness of the successes and challenges for deafblind people in Romania
and more broadly in the region. We congratulate them for their successful bid and
wish them every success with the conference.

DbI European Conference 2017

We have called for Expressions of Interest to host the 9th DbI European Conference
in 2017. We received two excellent applications and we have called for full bid
applications from the interested parties after which they will be presented to the DbI
Board for ratification. The successful applicant will be announced during the
conference in Lille.

Membership
DbI recognises that the success it achieves worldwide greatly depends upon the
support of its individual and corporate members to promote awareness and services.
Thank you to the many members who have renewed their membership to DbI this
year. We are delighted to welcome new members this year from Iceland, Ireland,
Germany, Denmark, UK, USA, Ethiopia, Zambia and Canada.
If you know of an organization who should be a member of DbI we would be happy
to send them a letter of invitation. Please pass on any suggestions to
[email protected].

Keeping in touch
We want to hear from you! Information sharing is essential to DbI and is what keeps
the organization strong and current. If you have information you want to share with
others or if you’re looking for a contact in a faraway place, please send us an email
and we can work together to find a solution.

Elvira Edwards & Bronte Pyett

DbI Secretariat.

The Countdown begins for the 16th DbI World Conference on

Deafblindness
Staff from Sense International (Romania) together with staff from Sense
International (UK) are in the early stages of preparing for the next DbI World
Conference to be held in Romania in 2015. Although not completely finalized, the
tentative dates are May 25-30, 2015.
Bucharest, the capital city of Romania and also its largest metropolis of two million
people, has been selected as the host city for this event. Once known as “The little
Paris”, this city has been booming of late, with changes creating an interesting blend
of old and new.
We anticipate a wonderful conference hosted by Cristiana Solomie and the rest of
her energetic staff at Sense International in Bucharest. If all the wonderful
developments on behalf of deafblind children they have been able to achieve in
recent years are any indication, we should be prepared for a great conference.
Watch for further information on the DbI website (www.deafblindinternational.org)
and DbI Facebook page (www.facebook.com/dbiint) regarding the conference
theme, call for papers, confirmed dates, venue, range of accommodations and
registration fees for the 16th DbI World Conference on Deafblindness.

Management Committee
The Management Committee for the 2011-2015 period includes the two elected
offices (President and the two Vice Presidents), the Past President, the Information
Officer and the Secretary:

Board Observers
DbI’s partner organizations, ICEVI and WFDB have observer status on the DbI
Board:
International Council for Education of People with Visual Impairment
Lord Colin Low
Contact: [email protected]
Website: www.icevi.org
World Federation of the Deafblind
Contact: [email protected] Website: www.wfdb.org
Honorary Officers

President
Gillian Morbey
Sense
Email: [email protected]
Vice-President

Bernadette Kappen
The New York Institute for Special Education
Email: [email protected]

Vice-President
Carolyn Monaco
Canadian Deafblind Association
Email: carolyn.monaco@
sympatico.ca

Immediate Past President

William Green
Email: [email protected]

Treasurer
Frank Kat
Royal Dutch Kentalis
Email: [email protected]

Secretary
Elvira Edwards
Senses Foundation Inc.
Email: [email protected]

Information Officer
Stan Munroe
Canadian Deafblind Association
Email: [email protected]

Large Corporate Members

AUSTRALIA
Able Australia
Scott Sheppard
Tel: +61 - 3 - 9882 7055
Fax: +61 - 3 - 9882 9210
Email: [email protected]
Website: www.ableaustralia.org.au
CANADA
DeafBlind Ontario Services
Roxanna Spruyt-Rocks
Tel: +1 - 905 - 853 - 2862
Fax: +1 - 905 - 853 - 3407
Email: [email protected]
Website:
www.deafblindontario.com
DENMARK
Interfond
Pierre J. Honore
Tel: +4563710218
Email: [email protected]
FRANCE
Réseau Français pour la Surdicécité “RFPSC” (French network for Deafblind)
Dominique Spriet
Tel: +33 - 1 - 4627 4810
Fax: +33 - 1- 4627 5931
Email: [email protected]
Email: spriet.dominique@
wanadoo.fr

GERMANY
German Deafblind Consortium
Jutta Wiese
Tel: +49 - 511 – 5100 815
Fax: +49 - 511 - 5100 857
Email:
[email protected]
CBM – Christoffel Blindenmission
Monika Brenes
Tel: 0032 (0) 2 2569000
Email: [email protected]
Website: www.cbm.org
ITALY
Lega del Filo d’Oro
Rosanno Bartoli
Tel: +39 - 071 - 724 51
Fax: +39 - 071 - 717 102
Email: [email protected]
Website: www.legadelfilodoro.it
SPAIN
ONCE Unidad Técnica de Sordoceguera
Pilar Gomez
Tel: +34 - 91 - 353 5637
Fax: +34 - 91 - 350 7972
Email: [email protected]
Website: www.once.es
SWEDEN
Resurscenter Mo gård
Michael Karlsson
Tel: +46 8 753 59 40
Fax: +46 8 755 23 68
Email: [email protected]
Website: www.mogard.se
THE NETHERLANDS
Royal Dutch Kentalis
Frank Kat
Tel: +31 73 55 88 280
Email: [email protected]
Website: www.kentalis.nl
UNITED KINGDOM
Sense
Gillian Morbey
Tel: +44 20 7520 0999
Fax: +44 845 127 0062
Email: Gillian.Morbey@
sense.org.uk
Website: www.sense.org.uk
Sense Scotland
Andy Kerr
Tel: +44 (0)141 429 0294
Fax: +44 (0)141 429 0295
Email: [email protected]
Website:
www.sensescotland.org.uk
USA
Perkins School for the Blind
Aubrey Webson
Tel: +1 - 617 - 972 7502
Fax: +1 - 617 - 972 7354
Email:
[email protected]
Website: www.perkins.org
Networks
Acquired Deafblindness Network
Liz Duncan
Email: [email protected]
Website: www.adbn.org
Acquired Deafblindness Network
Liz Duncan
Email: [email protected]
Website: www.adbn.org

CHARGE Network
Andrea Wanka
Tel: ++496251939797
Fax: +4916090309876
Email: [email protected]

Communication Network
Ton Visser
Email: [email protected]
Employment Network
Diana Bonilla Sinibaldi
Tel: +(502) 52089291
Fax: (502) 24347934
Email:
[email protected]

EDbN
Ricard Lopez Manzano
Tel: +34-678-712-619
Fax: +34-678-782-600
Email: [email protected]
Website: www.edbn.org

Latin America Network

Sandra Polti
ARGENTINA
Email: [email protected]

Outdoor Network
Joe Gibson
Tel: 4+4 (141) 429-0294
Email: [email protected]
Rubella Network
Network contact to be determined
Email: [email protected]
Siblings Network
Sabine Kersten
Tel: +32 476 612 879
Email: [email protected]

Social-Haptic Communication Network

Dr. Riitta Lahtinen & Russ Palmer
Tel: + 358 40 522 4201
Email: [email protected]; [email protected]
Tactile Communication Working Group
Bernadette Van den Tillaart
Tel: +1-740-426-6728
Fax: +1-740-426-6728
Email: [email protected]
Usher Study Group
Emma Boswell
Email: [email protected]

Mini corporate members

ETHIOPIA:
Ethiopian National Association of the Deafblind (ENADB)
Roman Mesfin
Tel: +251 11 1 55 50 56
Email: [email protected]

Ethiopian Sign Language and Deaf Culture Program Unit (EthSL & DC PU)
Andargachew Deneke
Tel: +251 11 1 23 97 55
Fax: + 251 11 1 24 32 72
Email: [email protected]

MALAWI
African Federation of the DeafBlind
Ezekiel Kumwenda
Tel: 00 (265) 999 952 391/888 852 391
E-mail: [email protected]

Small Corporate Members

ARGENTINA
Perkins International - Latin America Office
Graciela Ferioli
Tel: +54 351 4234741
Fax: +54 351 4234741
Email: [email protected]

AUSTRALIA
Senses Foundation Inc
Elvira Edwards
Tel: +61 - 8 - 9473 5422
Fax: +61 - 8 - 9473 5499
Email: [email protected]
Website: www.senses.asn.au
Australian Deafblind Council (ADBC)
Jeree Milroy
Tel: +61 3 9882 8596
Fax: +61 3 9882 9210
Email: [email protected]
Website: www.deafblind.org.au
The Royal Institute for Deaf and Blind Children
Annette Clarke
Tel: +61 - 2 - 9872 0366
Email: [email protected]
Website: www.ridbc.org.au
Foresight Australia
Trish Wetton
Tel: +612 9872 9000
Fax: +612 9872 9111
Email: [email protected]

AUSTRIA
Österreiches Hilfswerk für Taubblinde
Christa Heinemann
Tel: +43 - 1 - 6020 812 13
Fax: +43 - 1 - 6020 81217
Email: [email protected]
Website: www.oehtb.at

BRAZIL
Grupo Brasil de Apoio ao Surdocego e ao Múltiplo Deficiente Sensorial
Shirley Rodriguez Maia
Tel: +55 - 11 - 5579 5438
Fax: +55 - 11 - 5579 0032
Email: [email protected]
Website: www.grupobrasil.org.br
CANADA
CDBA National
Tom McFadden
Tel: +1-866-229-5832
Fax: +1(905) 319-2027
Email: [email protected]
Website: www.cdbaontario.com
Canadian Deafblind Association Ontario Chapter
Cathy Proll
Tel: + 1-519-759-0520
Fax: + 1-519-759-1425
Email: [email protected]
Website: www.cdbraontario.ca
Resource Centre for Manitobans who are Deaf-Blind (RCMDB)
Jane Sayer
Tel: 1-800-855-0511
TTY: 1 204 284 2531
Fax: 1-204-452-0688
Email: [email protected]
Website:
www.rcmdb.mb.ca
Rotary Cheshire Homes
Jennifer Robbins
Tel: +1 - 416 - 730 - 9501
Fax: +1 - 416 - 730 - 1350
Email: [email protected]
Website: www.rotarycheshirehomes.org
The Lions McInnes House - Group Home for Deafblind Persons
Joan Brintnell
Tel: +1 - 519 - 752 - 6450
Fax: +1 - 519 - 752 - 9049
Email: [email protected]

CHINA HONG KONG

Resource Centre for the Deafblind
The Hong Kong Society for the Blind
Doreen Mui
Tel: +3723 8338
Fax: +2788 0040
Email: [email protected]
Website: www.hksb.org.hk

CROATIA
Mali dom – Zagreb
Darija Udovicic Mahmuljin
Tel: +385137746532
Email: [email protected]
Website:
www.malidom.hr

CYPRUS
Pancyprian Organization of the Blind
Christakis Nikolaides
Tel: +357 99657467
Fax: +357 22495395
Email: [email protected]

DENMARK
Center for Deaf
Else Marie Jensen
Tel: +45 44 39 12 50
Fax: +45 44 39 12 63
Email: [email protected]
Website: www.cfd.dk
The National Resource Centre on Disability, Assistive Technology & Social
Psychiatry
Marianne Disch
Tel: +45 – 41 - 93 24 65
Email: [email protected]
Website: www.dovblindfodt.dk
Danish Parents Association
Vibeke Faurholt
Tel: (45)+98854332
Email: [email protected]
The Centre for the Deafblind (Dovblindecentret)
Lars Søbye
Tel: +45 99 31 87 00
Email: [email protected]
Website: www.dbc.rn.dk
Nordic Centre for Welfare and Social Issues
Henriette Hermann Olesen
Tel: +45 - 96 - 47 16 00
Fax: +45 - 96 47 16 16
Email: [email protected]
Website: www.nordicwelfare.org

FINLAND
The Finnish Deafblind Association
Heikki Majava
Tel: +358 40 529 3439
+358 40 604 7477
Email: [email protected]
Website: www.kuurosokeat.fi

GREECE
Hellenic Association of Deafblind “The Heliotrope”
Diamanto-Toula Matsa
Tel: 30-210-6440689
Fax: 30-210-6440689
Email:
[email protected]

ICELAND
National Institute for the Blind, Visually Impaired and the Deafblind
Estella D. Björnsdóttir
Tel: 0+0 (354) 545-5800
Fax: 0+0 (345) 568-8475
Email: [email protected]

INDIA
Sense International (India)
Akhil Paul
Tel: +91-79-26301282
Fax: +91-79-2630 1590
Email: [email protected]
Website: www.senseintindia.org

IRELAND
The Anne Sullivan Centre
Tel: +353 (0) 1 830 0562
Email:
[email protected]
Website: www.annesullivan.ie
Deafblind Ireland
Kathleen Deasey
Email: [email protected]
Website: www.deafblindireland.org

ISRAEL
Nalaga’at Center
Adina Tal
Tel: +972 (0)3 633 08 08
Fax: +972 (0)3 682 37 15
Email: [email protected]
Website:
www.nalagaat.org.il

NETHERLANDS
Bartimeus
Betty van Wouw
Tel: +31 - 343 - 526 650
Fax: +31 - 343 - 526 798
Email: [email protected]
Website:
www.bartimeus.nl
Kalorama
M. Verseveldt
Tel: +31 24 684 77 77
Fax: +31 24 684 77 88
Email: [email protected]; [email protected]
Website:
www.kalorama.nl
Royal Visio
Kees Kuyper
Tel: +31 - 55 - 5800 695
Email: [email protected]
Website: www.visio.org
University of Groningen
Marleen Janssen
Tel: +3150-3636575
Email: [email protected]

NEW ZEALAND
Royal New Zealand Foundation for the Blind (RNZFB)
Veta Endemann
Tel: 0064-09-3556900
Fax: 0064-09-3556880
Email: [email protected]
Website: www.rnzfb.org.nz

NORWAY
Signo kompetansesenter
Anne Lise Høydahl
Tel: +4733438600
Email: [email protected]
Signo Døvblindesenter
Knut Johansen
Tel: +47-33-438 700
Email: [email protected]
Website: www.signodovblindesenter.no
Eikholt
Roar Meland
Tel: +47 3288 9050
Fax: +47 3288 9052
Email: [email protected]
Website: www.eikholt.no
Regional Resource Centre for Deafblind, Statped Vest
Evabritt Andreassen
Tel: +47-55-923 485
Fax: +47-55-923 491
Email: [email protected]
Skaadalen Resource Centre
Else Marie Svingen
Tel: +4722703700
Fax: +47 - 22 703 715
Email: [email protected]
Website: www.statped.no

SINGAPORE
Lighthouse School
Koh Poh Kwang
Tel: +65-2503 755
Fax: +65-2505 348
Email: [email protected]
Website: www.lighthouse.edu.sg

SPAIN
APASCIDE - Spanish Association of Parents of Deafblind People
Dolores Romero Chacon
Tel: +34-91-733 5208
Fax: +34-91-733 4017
Email: [email protected]
Website:
www.apascide.org
Spanish Federation of Deafblindness (FESOCE)
Ricard Lopez i Manzano
Tel: +34 93 331 7366
Fax: +34 93 331 4220
Email: [email protected]
Website: www.fescoe.org

SWEDEN
The Swedish Resource Centre for Matters Regarding Deafblindness
Michael Karlsson
Tel: +8 753 5940
Fax: +8 755 2368
Email: [email protected]
Website: www.nkcdb.se

SWITZERLAND
SZB Beratungsstellen für hörsehbehinderte und taubblinde Menschen
Mäde Müller
Tel: +41 (0)44 444 10 81
Fax: +41 (0)44 444 10 88
Email: [email protected]
Website: www.szb.ch
Tanne, Schweizerische Stiftung für Taubblinde
Jette Ehrlich
Tel: +41 - 44 - 714 7100
Fax: +41 - 44 - 714 7110
Email: [email protected]
Website: www.tanne.ch

UNITED KINGDOM
Sense International
James Thornberry
Tel: +44(0)20 7520 0980
Fax: +44(0) 20 7520 0985
Email: [email protected]
Website: www.senseinternational.org

UNITED STATES OF AMERICA

The New York Institute for Special Education
Bernadette Kappen
Tel: (718) 519 – 7000
Fax: 11+718-881-4219
Email: [email protected]
Website: www.nyise.org
Overbrook School for the Blind
Jackie Brennan
Tel: +1 - 215 - 877 0313
Fax: +1 - 215 - 877 2433
Email: [email protected]
Website: www.obs.org
Texas School for the Blind & Visually Impaired - Texas Deafblind Project
Cyral Miller
Tel: +1 512-206-9225
Fax: +1 512-206-9225
Email: [email protected]
Website: http://www.tsbvi.edu/deaf-blind-project
Helen Keller National Center for Deaf-Blind Youths & Adults
Nancy O’Donnell
Tel: 011-516-944-8900
Email: [email protected]
Website: www.hknc.org

VENEZUELA
SOCIEVEN, Sordociegos de Venezuela, A.C.
Maria Luz Neri de Troconis
Tel: + 58 - (212) – 952 94
Fax: + 58 - (212) – 952 63
Email: [email protected]
Website:
www.socieven.org