European Newsletter - Issue 56
Volume 21 number 1, April 2015
Table of contents:
- President's Message April 2015 by Panagiota (Betty) Leotsakou, President ICEVI-Europe
- ICEAPVI 2015 by Georgios Kouroupetroglou, Greece
- From my eyes to your heart by Angelette Akkermans, The Netherlands
- Beyond Accessibility: Museums and Exhibits Friendly to Visually Impaired and Blind Visitors by Nurit Neustadt-Noy
- The politicians' blind spot by Peter Rodney, Denmark
- Communication: What is not being said? Learning Together, in practice, an example by Anita Bruining, Zozijn, The Netherlands
- Neuro Vision Technology teaches Søren to see again by Sarah Cecilie Boss, Denmark
- A summary of the presentation given on the ECPVI in Bratislava by Heidi Deknudt, Belgium
- 5th European Conference on Psychology and Visual Impairment (ECPVI 2014). 20-21 November 2014, Bratislava, Slovakia
- Conference: New methods for diagnosing and developing visual perception in children with disabilities. 18 June 2015, Prague, Czech Republic
Dear Members of ICEVI-Europe,
First and foremost, I am in the fortunate position to announce that the International Conference on Enabling Access for Persons with Visual Impairment which was held in Athens, Greece on February 12-14 2015 has taken place with great success. Overall, this conference whose thematic areas centered on Information Technologies and Communication (ICT) and Assistive Technologies for people with visual impairment was well received by all conference attendees and fellow colleagues, proving to be a valuable, stimulating and interesting event.
Given the scope of the conference, we have devoted a significant portion in this issue of the newsletter providing you with the content of the invited guest speech, as well as reports and reviews of the conference from the perspective of both the organizers and parents association. Conference proceedings and other useful information are available on the conference website at http://access.uoa.gr/ICEAPVI-2015 and on the website of ICEVI-Europe at www.icevi-europe.org.
Also included in this newsletter is an interesting paper on the phases of the emotional process older people with visual impairment encounter. Equally as noteworthy in this issue of the newsletter is a story of how NVT (Neuro Vision Technology), used by an Occupational Therapist at IBOS, The Institute for the Blind and Visually Impaired in Copenhagen, helped a 50-year old individual who has suffered from 4 strokes rehabilitate his sight. A thought-provoking story conveying the conditions of inclusion in Denmark and the issue surrounding training teachers in the education of children with special needs is certain to spark your interest. I would also like to encourage you to attend the professional conference at the Faculty of Humanities of Charles University in Prague on June 18, 2015 with the title “New methods for diagnosing and developing visual perception in children with disabilities.” For more information regarding this conference, please visit the conference website at www.roksedou.com.
ICEVI Europe continues its good work along with you and on your behalf. Your contribution of ideas and suggestions are welcomed and play an important role in our success.
We would like to strongly encourage all National Representatives (National Contact Persons) to submit in the form of articles any news, events, projects, publications, scientific work or good practices that have been undertaken in their country in the field of visual impairment to the Coordinator of the Newsletter, Mrs. Andrea Hathazi, so that it may be included in future issues of the ICEVI-Europe Newsletter. Moreover, the Board Members of ICEVI-Europe are planning to hold training seminars with the National Representatives under each of their sub-region, in order to personally thank them for their continuing service to ICEVI-Europe and inform them of the importance and value of their role to the organization.
We are hoping you and your loved ones had a very a blessed Easter inspired with new faith, new hope and new goals!
On behalf of the Board of ICEVI-Europe,
Panagiota (Betty) Leotsakou, President
International Conference on Enabling Access for Persons with Visual Impairment (ICEAPVI-2015)
Speech and Accessibility Laboratory,
National and Kapodistrian University of Athens
The first International Conference on Enabling Access for Persons with Visual Impairment – ICEAPVI has been held in Athens, Greece from 12 to 14 February 2015. The conference was organized by the National and Kapodistrian University of Athens, Department of Informatics and Telecommunications, Speech and Accessibility Laboratory (http://speech.di.uoa.gr/) and co-organized by the International Council for Education and Rehabilitation of People with Visual Impairment - Europe Region (www.icevi-europe.org).
More than 220 participants from 27 countries all over the world had the opportunity to attend the program of the conference, which included 37 scientific papers, 5 workshops, a round table on “The Power of Parent Organizations” and an exhibition of Assistive Technologies and Services for Persons with Visual Impairment.
Each scientific submission was reviewed by two or three members of the Scientific Program Committee consisting of 28 internationally recognized experts in the domain. The acceptance ratio for the oral papers was 61%. The proceedings of the conference have been published as a printed volume of 234 paged (ISBN 978-960-466-144-2). Morever, the electronic proceedings of the conference are freely available on its website.
The invited keynote speech of ICEAPVI-2015 was presented by Professor Klaus Miesenberger (University of Linz, Austria), with the title “Advanced and Emerging Solutions: ICT and AT in the Education of Low Vision and Blind Students”. Dr Nurit Neustadt-Noy (Foundation for Service Development at National Insurance Institute of Israel and Commission for Equal Rights for People with Disability) gave another invited speech entitled: “Beyond Accessibility: Museums and Exhibits Friendly to Visually Impaired and Blind Visitors”.
The social events of the conference included a welcome cocktail at the Tactual Museum at the Lighthouse for the Blind of Greece, a gala dinner, a Guided Tour of the New Athens’ Acropolis Museum and a Walk through the Flea Market and old town PLAKA – Monastiraki. The participants of the conference had also the possibility to follow a Tour of the "Dialogue in the Dark" at the Athens’ Badminton Theater.
After the success of ICEAPVI-2015 in Athens, I believe that the International Council for Education and Rehabilitation of People with Visual Impairment - Europe Region, will continue to support the organization of the next ICEAPVI conferences towards the development of an established scientific event in the domain of Accessibility for Persons with Visual Impairment.
From my eyes to your heart
Angelette Akkermans, The Netherlands
Impression of the ICEVI Congress, from the perspective of parents, to enable access for individuals with a visual impairment, organized by the University of Athens, Athens, Greece, February 2015.
At the invitation of Betty Leotsakou, chair of ICEVI in Europe, we travelled as Mi ta stimabo to give a presentation for parents in Greece.
On the first day we were welcomed in the Tactual Museum at the Lighthouse for the Blind in Greece. It was a great experience to see what was possible for the target group. We alerted the people there to the possibility of collecting plastic tops to raise money for guide dogs for the blind - something similar is already done in Greece for making wheelchairs available - since a project like that brings in a lot of money. In Belgium – where we operate - this came to an amount of € 56.000,00 in 2014. Quite a lot of money!! So it is really worthwhile to organize something like this! Our friend in Athens, who is a chef, has offered to give cooking lessons for the visually impaired. He saw this as a challenge. They will think about it and it will be organized when possible.
The congress with some 200 participants was very well organized. There were many very inspiring speakers such as Professor Klaus Wiesenberger and Dr. Nurit Neustad-Noy. The location where we met was the planetarium, Eugenides Foundation of Athens. This building had been kindly put at our disposal for free to make this congress possible. The catering - coffee, tea, meals - was excellent!! Aristos or efgaristo as the Greeks would say.
Dr. Nurit Neustadt-Noy gave a lecture about the accessibility of museums for the visually impaired. She shared with us her knowledge and experience worldwide. She really is a phenomenon in her field and a highly esteemed guest speaker at congresses like this. She really knows how to keep people interested till the end.
There were speakers about computer haptic effects in maths and science, lessons which support student learning; about media access – the automatic generation of daily newspapers in audio daisy format; about the contribution of audio - tactile maps to the spatial knowledge of individuals with visual impairment; about the 8 - dot braille code for complex nemeth symbols.
The Parents Association of Israel spoke about UN-rules and human rights and about the results parents have attained. Yael Weisz-Rind talked about the results "Ofek Liyladenu" attained. The Israel National Association of Parents of Children with Visual Impairment has been highly concerned for years about the very limited availability of accessible schoolbooks and materials for their children. At the end of 2011 they appealed to the High Court of Justice against the Ministry of Education (MoE) for not taking responsibility to provide the necessary materials for students with visual impairment.
The appeal was very successful and the MoE took on its responsibility. As a result the MoE has ensured funding for the first time and designed a new process by which the children receive accessible school materials before the start of the new academic year just like their sighted peers. The books are provided in the format preferred by the student: digital file, Braille, enlarged print and audio recording.
In spite of their great achievement and the new attitude of the MoE major difficulties came up during the transition period, which required an on-going follow up and involvement. These included weak planning of the process; lack of expertise and tools; lack of communication with the parents about the process and the timeline; and delays in publishing the regulations of the Ministry and its communication to schools.
Ongoing feedback by the parents was crucial for them in their discussions and working together with the MoE. The feedback was useful for modifying and changing the process: from the first steps in compiling reading lists to the production of the books up to the timely distribution of the books to the students. The Supreme Court Appeal is still pending and allows them to maintain pressure on the MoE. For the following academic year they expect to see a considerable improvement and an efficient system for providing accessible school materials. Guila Seidel is the chairwoman of "Ofek-Liyladenu" www.ofek-liyladenu.org.il a beautiful name that means Our Children's Horizon. The organisation was established in Israel in 1997, as a national non-profit association of parents of children with visual impairment. Ofek Liyladenu is a big community of more than 1200 families from all parts of Israeli society: Jewish, Muslims and Christians, and provides support and services to the children and their families.
Another interesting presentation I would like to mention was that of Nissan Yaron and professor Klaus Miesenberger: the introduction of the revolutionary super-Braille keyboard. As we all know the visually impaired all around the world have difficulties in adapting to touch screen technology. But with Inpris Super Braille Keyboard - the most advanced braille app in the world - they can. Braille on touch screens can be directly typed into a text box, with automatic tracking of the movement of every separate finger, and availability of support languages such as English, Arabic, Spanish, Italian, Russian, German, and soon - as they have assured me - Dutch too.
This is a great technological development with great savings as a result. This is a perfect solution for underprivileged users: purchasing an android device instead of a $2000 dollar/euro braille machine. The new Inpris braille app provides a more advanced and easy to use solution at a much lower cost. For more information contact Nissan , www.inprisltd.com or/ Prof Miesenberger, Institut Integriert Studieren www.jku.at/iis.
Professor Klaus Miesenberger engages in ICT developments for individuals who need specific adaptations in Austria. He often takes part in Summer Camps and tries to inspire enthusiasm in young people. He pointed out that there is a great shortage of ICT-ers, innovators. Later on he appointed our Dutch Tim in het Veld. Google and Microsoft are quite willing to employ these people. So this is quite a challenge for our youngsters.
Another interesting presentation about possibilities for students in Israel was held by Moshe Oved, Zohar Ginio, and Nati Bialistok-Cohen: the promoting of higher education and assistance for the visually impaired in Israel. They showed us a great model from the Aleh society and they made it clear that if you really want something you can reach your goal!!
In Greece there are three parent organizations at work. This doesn't make it easy for the government to negotiate. As it seems to be difficult to establish one combined new parent association, they would be well advised to create a system of circulating chairmen/chairwomen, to consult each other a lot about pending issues, to discuss pressure points and to appoint one person - the chairman/woman for that year - for consultation with the government. There will be a lot of communal wishes and one has to strive to come to solutions together. The main thing will always be the common good of our children.
It is of the utmost importance to share knowledge and information, to respect children's rights by providing them with accessible school materials, to help the teachers with support from the government. It is important that parents and healthcare providers become partners and/or allies. One single comment to one of the parent organizations was that their flyer did not really live up to the accessibility rules - a pink background and red lettering are difficult to see/read!
It is important to know that communication is about recognition. Parents know what they are talking about, they experience often the same problems and questions. Parents can learn a lot from each other and often they are very passionate, driven, enthusiastic and above all resourceful and concerned, they are thinking outside the box. They don’t have to deal with protocols and rules but want to achieve information for their child. Recognition, exchanging tips and sharing enjoyed experience with each other. This is a reason to be together as one unit to speak and/or negotiate with the health care system, the providers, education/schools, and all others who are involved in this world.
Often they speak out their wishes against each other, and sharing of this knowledge means a lot for them, delivers an enormous amount of power. Parents have enormous need for contact with each other, sharing their experiences, asking questions and coming up with solutions, this is what parents have in common.
Parents want more than an answer according to protocol or rules, which is what they usually get from the support institutions/organizations. They want to know from each other whether it really contributes to the best possible option, to live a normal life for their child. Whether it's the diagnosis, or the support from an institution, or education, (school) books, games, tools etc.
Important is recognition of the need to find other parents who experience the same.
It is also important to realize that you're not the only one, even for the children it is important to know that they are not the only ones, and to develop a good self-image.
Our own presentation had to do with the personal experience of a parent. What does one run into and what proves to be possible or impossible when one believes in one's child? Do always trust your parent’s intuition, whatever someone else may say! Stick to your own common sense, feeling, knowledge of chances and possibilities. We did also mention in passing Janusz Korczak (www.korczak.nl) He is someone who believes in the skills and possibilities of every child and who wrote many interesting books. We tried to explain what is possible when you really do believe in your own child. Giving the child the possibility to develop him/herself in a firm and safe way leads to self-confidence. When the roots of a tree are given the possibility to develop in a strong way, when they are well rooted and stand firm, it will take quite a storm to blow down the tree. Every child wants to be just like the others and to grow up as an independent being. By giving them that opportunity and making them independent from you as a parent, we can give them the desire for a better world.
The effect was that one of the young volunteers - a companion with a limitation herself - phoned her mother to tell her: "Mum, you did a fantastic job. You always believed in me. Thanks a lot!" That for me was an unexpected, very strong and moving compliment for my lecture.
In case you would like to receive the full text of our lecture, or the research of Geert van Hove that I mentioned in my lecture about European early childhood education a research journal about working with mothers and fathers of children with a disability: metaphors used by parents in a continuing dialogue. 8th of November 2011 please mail to or see the ICEVI newsletter before.
A statement that really struck me during one of the presentations was something Einstein once said:
I fear that the day technology will surpass our human interaction, the world will have to face a generation of idiots.
There were speeches about the concept of normal/abnormal and disabled and non-disabled, when they lose their meaning as individuals. Despite modern technology there are nowadays more cases of exclusion as a result of social exclusion. We have to come to a different mindset, the establishing of a certain image about changes and possibilities.
We must help children to learn to develop skills. It is very important for the visually impaired to keep the pace up. Here we find the professional on our way. At the moment the development of skills does not always exist. In some countries the development of skills - such as skills on the medical, personal and environmental level – is really alarming.
In the world of the professional it is unfortunately quite often a matter of status and of ego and mostly a financial incentive. Not everything can be bought with money though. Sometimes professionals do not understand this and feel that everything has to be reimbursable. But enough is enough, isn't it? If one can get a lift in someone else's car it is not necessary to come up with a receipt!! Personal gain can never be more important than the smile on the face of the fellow man you render a service to. Just leave it, you want to say, but you do have to realize that a smile does so much more. But to be able to see and feel this you need to have the ability to empathise. That is something that makes us really rich! It makes us independent. It is of the utmost importance that there is no interlocking of interests, that you fight for the interests of the child, the necessity for adaptation etc. Passion and commitment will definitely get you a long way.
Parents of children with visual impairment quite often don‘t know which possibilities for rehabilitation are available to them. This is what eye-specialists/doctors know. They have to share their knowledge with other specialists, rehabilitation centers and of course with parents. This can make a huge difference in the life of the child. Important above all is if they have taken account of the wishes of the child and if this fits with the possibilities and ambitions of the child.
The power parents have is enormous. Don't hesitate to share your own knowledge and insight with professionals so they too come to know what is possible and what isn't. Surely it takes a lot of energy to keep up with developments, but it is of great advantage to the child with an impairment. This way the professional too will get more joy in his/her work, the emotional knowledge, the ratio/knowledge connected with the “emotional” parent (that is what we are called quite often named) and then it can start to flourish in the most optimal way, a topper of a child, who really believes in him/herself. More important than any professional skill is enthusiasm. If you doubt, ask your professional, what would they do, if it were their own child?
Parents are experience experts as was already said in an ICEVI-ICF congress in Graz. These congresses are informative and it would be really great when all the know-how that is shared and spread here would be taken into account out there. What is needed here is a turn over a real transition. Parents are quite often the connecting factor that would like to make a new movement possible, but the old bunch quite often stick stubbornly to old habits. What is needed is a new mind-set. Listening to your soul and listening good, this will certainly lead to more job satisfaction.
I would like to end with a Greek word: aristos or efgaristo. Yes, it was good, it felt hospitable and most of all instructive and useful. Thanks for the closing statement, the compliment that was given to us as parents. The connection or learning from/with each other is really necessary, and now it has to be followed up!! We don't care who brings the message, if it is just brought, spoken out loud, for then in the future our children will prosper.
Beyond Accessibility: Museums and Exhibits Friendly to Visually Impaired and Blind Visitors
For decades art has not been accessible for visually impaired and blind individuals due to conceptual and technical reasons. Conceptually it was unclear to museum managers why would a blind person wish to visit a museum since they have no visual stimulation and ability to appreciate two dimensional art exhibitions set behind glass cases or behind barriers to assure their security with fine print labels which are too small to be read.
It was the Disability Act under different names in different countries that imposed thinking out of the box by museum managers, a move that started the inclusion of blind individuals among museum visitors.
The Disability Act was not enough for inclusion. It was the birth of new friendly audio technology and the Audio Description movements in various forms that closed the gap and facilitated a meaningful visit to museums, in addition to trained guides specializing in art viewers who have special needs, among whom are visually impaired persons.
In order to provide inclusive access to art, a strategy and specialized technologies for the use of blind visitors, have been developed. This fact contributes to removing physical barriers and offers visual information to blind art lovers.
The movement of Inclusive Design also contributed to adopting sightless patrons as regular visitors in museums. An educational approach with goals to provide access to art for all, became the norm in many museums as they noticed the impact of large numbers of elderly/third age group and the economic effect of these museum visitors, many of whom have low vision.
Accessibility arrangements are put in place to support inclusion and enhance visual appreciation for those with no sight or with limited sight, allowing universal participation in viewing the arts.
In addition education department in museums provide virtual access to their archives, art collection and exhibitions and in actuality practice their mandate to enable everyone to enjoy culture and inspire hidden artistic talents, encouraing pro-active dialogue with art.
Some organizations such as ArtbeyondSight took the leadership role in opening doors conceptually and strategically to educate professionals to cater for guided tours for visually impaired persons in museums and prepare resources to support such visits.
Audio descriptions, indoor devices, and other accessible technologies, along with exhibit design improvements and better information sharing among cultural and educational institutions, have made these resources increasingly enjoyable and accessible to visitors with vision loss.
However, to enjoy museum visits, the visually impaired person should be well trained in Orientation and Mobility in complex environments to overcome physical obstacles and have good way-finding skills to safely navigate in unfamiliar environments and changing spaces in museums.
The politicians' blind spot
By Peter Rodney,
Inclusion Consultant at the Institute for the Blind and Partially Sighted.
What would you say if your child had a teacher who could not read or write? It would probably be changed quickly. The situation is comparable to the situation of the blind and visually impaired children and young people who, in almost all schools, are taught by teachers who are not trained for it.
Naturally we expect our teachers to be competent in the subjects they teach our children. But this is not the case for Denmark’s approximately 500 blind and visually impaired students. The only thing that is being done by competent and qualified people in this field is the visit of the visual consultants. A teacher can request a visit from a visual consultant if he or she has a blind or visually impaired child in their class. The consultant advises teachers on educational matters, but they do no teaching in the classroom.
This issue is about conditions of inclusion in Denmark. Like most other European countries, we include the visually impaired children in mainstream schools.
I have now for a few years been in the Danish Ministry of Education resource centers practice and know-how panel. It is an exciting and challenging experience to be a part of this work. Central to the strategy of the Ministry of Education is that increased inclusion "may enhance all students' learning", but especially to secure that "employee groups working with inclusion have adequate knowledge about the education of students with special needs, and that they have access to resource persons who can guide and support their work”. This is where the good thoughts begin to crack. It is obvious that if you teach a child with disabilities, it requires knowledge of how to do it. If the teacher who meets the visually impaired child is not educated in or competent to meet the child's learning needs, there is a great risk that the yield of schooling only becomes limited. This is clearly documented by the low education rate and unemployment rate for people with visual impairment approaching 80%. For years, there has been no requirement for skills to teach e.g. blind children.
The weirdest thing is that municipalities are responsible for special education and inclusion and they actually spend a lot of money in this area. They just use it wrongly. Many blind and partially sighted people get compensatory teaching from so-called support people, but it is only a minority of those who have skills in this area.
The explanation lies in the fact that the specialized competence is not a legal requirement, and that it is the country's municipalities who manage teaching in primary schools. So if you ask the Ministry of Education, you will always be told that a given Minister of Education has confidence that municipalities carry out their work safely.
In recent years there has been written about "too little support for pupils from special classes", "lack of specific special educational competencies" and so on. Many descriptions which suggest that the implementation of inclusion has it quite hard.
How is it in reality? I have in March 2014 visited two schools, which illustrate the differences in the conditions for the inclusion of visually impaired students.
The first was a school in Boston, Massachusetts. Here I saw the inclusion of a visually impaired girl in 3rd grade. Three days a week she was taught by a special education teacher from the national resource center. This teacher had a 2 year course in visual pedagogy from the University of Boston (TVI Teacher of the Visually Impaired) and had 15 years of teaching experience of the visually impaired. The teaching was done in the classroom, in close cooperation with the class teacher who had a master's degree in special education. In addition, the class had a practical assistant for 15 hours per week and employees had one hour supervision per week by a psychologist.
The other school was in Vordingborg, Zealand, where a blind girl in 4th class was taught by a teacher and a practical helper with no education in this field for 35 hours. Neither of them had a special teacher training. Neither of them had been allowed to attend courses or training in the education of blind children. The head teacher explained, "That kind we simply cannot afford." The only support employees receive is the help of a visual consultant who comes to the school once a month.
It is evident that these two cases provide a wide variety of conditions for inclusion. For inclusion to succeed, it is essential that teachers have skills that can meet students' learning needs.
To my question in Boston, about "why do you do so much for this visually impaired girl?" I got the answer: "Because the law says that we need to". In Denmark we focus on the good will or as the Ministry of Education puts it in its strategic plan "it is the municipalities that bear the main responsibility for the transition to enhanced inclusion in elementary school" But no authority shall ensure that it is actually happening in a qualified way!
So dear Minister of Education: If it was a legal requirement, we professionals trained in visual impairment, could ensure municipalities meet their responsibilities. And if you did it right by involving us in the practical solutions, I can guarantee that it incurs no extra cost. It’s a matter of using our resources in the right way.
Communication: What is not being said? Learning Together, in practice, an example
Zozijn (the Netherlands)
Communication to and with people with severe (multiple) intellectual disabilities is often difficult. We often do not understand what the client is doing and the client sometimes does not understand us (our language). Learning Together (LT) is a development that matches the capabilities of the client. The programme is practical and the conditions are created for the client to develop in a fun way - in his own way.
In this article I describe how the use of Learning Together has changed the life of Gerben.
Gerben is a client who is 24 years old. He lives in Zozijn, a care organization for people with intellectual disabilities. During the day he visits the day care centre at Zozijn.
Gerben has an intellectual disability (Down’s syndrome) and ASD (autism). He is visually impaired, but hears well. Gerben’s behaviour is difficult to understand, such as getting angry, pushing etc - aimed at people or objects. His developmental age is 1.5 to 2 years.
For affection and attention Gerben looks to other people. In contact with others he takes initiative, focused on what he wants. He points and names, for example, food and drink.
Gerben communicates through some gestures, body language, sounds, tones and about 40 words, e.g. "tat tat '' means French fries," milts " means swimming. Because of his poor eyesight, he misses a lot of visual information.
The Deployment of Learning Together
Since 2010 Learning Together has been used with Gerben. The teams of the home and day care are trained to do every day interaction sessions aimed at deepening the contact with Gerben by mirroring him. In these sessions everything Gerben does, the attendants do too. His posture, movements and sounds are mirrored. Through these sessions contact with Gerben is deepened, increasing his security and trust in the people around him. Gerben is increasingly taking the initiative and reciprocity / turn taking have evolved, the basic conditions for the development of communication. At the same time we (mother, counsellors, speech therapist) have created a communication passport. This passport describes all the sounds and words, gestures and movements that Gerben uses. The significance of these signals is also described in the passport and is known in this way by all. We also record Gerben’s gestures, which we cannot yet identify. We have given meaning to these gestures by agreeing how we will respond, consistently, at all times. Gerben uses the gestures now consciously because we do respond, and our responses are unequivocal! Gerben shows that it is his way of communicating that we connect to.
Now that the gestures of Gerben have been mapped, we are now expanding his repertoire and using, the (new to him) signs of ‘Learning Together’ in our communication with him. We make the gestures in front of him, on his body or under his hands. The gestures are first made on his body because of his level of development and impairment and to make him familiar with this form of communication. Alongside the gestures we speak short phrases, everyone saying the same thing. We focus first on recognition, then on the possible understanding of the words and gestures. When Gerben comes to understand these gestures and words, we will make the gestures under his hands to "teach" him new gestures. We put our hands under his hands and make the gestures together. These gestures he understands and they are largely already his own.
An example of a gesture for the body: you tap twice with your hand on your mouth and say "mmmm" and "eat". The gesture on the body: you tap twice with your hand on his mouth, saying "mmmm" and "eat". The gesture with the hands: you put your hand under his hand and put his hand to his mouth and say "mmmm" and" food. You make the gesture together, so it will make possible the gesture itself.
Communicating with Gerben has greatly improved, we can make it clear what is going to happen and he can usually make clear to us what he wants.
At present Gerben communicates with words and gestures. He also makes new gestures himself that we need to discuss quickly with all stakeholders, to agree the meaning.
Gerben is talking more and more, using the gestures helps him make the words and he is easier to understand. There are now more than 30 words in his active vocabulary and almost every month a new word comes. Gerben talks clearly, for he always hears the same word used by his interpreters. The communication passport is growing and growing. Gerben now communicates spontaneously with gestures and words what he has experienced, and thus has a better understanding of his environment.
Example: Gerben went 2 years ago for an operation to the hospital and after surgery, in his bed, he made the gesture of "house / home". For him this was a new gesture; he wanted to go home!!
His behaviour that was difficult to understand is decreasing. If the behaviour still occurs, it is clear to us why Gerben is displaying this behaviour. Less often do we not understand him or he does not understand us.
With Learning Together we focus on the development of conditions for communication; contact, building security and trust, interaction, initiative, reciprocity and turn taking, the communication can then continue, allowing for further development of the individual.
Learning Together is a developmental programme for people with multiple (and visual) disabilities. The programme was developed in Scotland. Learning Together has been used there for 30 years with this group.
Learning Together is consistent with the level of development of the client, however young that level is. First we want to achieve successful communication, successful communication being the key to development and learning.
We usually work with communication problems at the cognitive level of the client, but if you do not understand, feel stressed or angry, you cannot develop and learn. Learning Together teaches us to fully meet the client and connect on every level, especially on the social and emotional level. After all, if you feel you are understood and have contact with another, then you develop a feeling of safety and confidence, and you experience fun. In this way you can develop.
Learning Together is used by:
- people with intellectual disabilities and a young developmental level
- people with multiple (and visual) disabilities
- people with intellectual disabilities and difficult to understand behaviour
- young people with social and emotional difficulties
- people on the autistic spectrum or with a diagnosis of autism
- ageing people with dementia
Lee M. and MacWilliam L. (2008) Learning together: a creative approach to learning for children with multiple disabilities and a visual impairment. RNIB London
Possibilities for an introduction to Learning Together (in the Netherlands):
- Two day course for speech therapists, autumn 2015, a day in September and a day in October
- Two day course for parents and carers, multidisciplinary
- Two evenings to get acquainted with LT
- Presentation of 1- 3 hours LT
- Company training in consultation
Anita Bruining, speech therapist
Zozijn, Specialist in Learning Together Netherlands
NVT (Neuro Vision Technology) teaches Søren to see again
By: Sarah Cecilie Boss,
Journalist at Hjernesagen, translated by Marie Fasmer, Development Officer at IBOS.
50-year-old Søren Petersen rehabilitates his sight, after four strokes, with a long plastic panel with colored lights, a computer and a will of steel. The lightbar teaches him to compensate for the sight he has lost.
It was in January 2013, six months before he turned 50, that Søren Petersen had four strokes. The only thing he remembers from the chaotic days at the hospital is when the neurologist said that he should not expect to see again.
Søren Petersen escaped, following the blood clots, without paralysis and speech difficulties. Not everyone is that lucky, but his memory and eyesight did not get off quite so graciously. What before was a photographic memory, is now fragmented and full of holes and his sight is reduced to light and shadows and has completely changed.
Today, a year later, Søren Petersen attends visual training several times a week at IBOS, The Institute for the Blind and Visually Impaired in Copenhagen. Here Occupational therapist Gitte Thranum Haldbæk coaches him in a method called Neuro Vision Technology (NVT) which is originally Australian. The method teaches Søren Petersen to compensate for what his eyes cannot see.
Limited vision, no colour and twilight
20 - 30 percent experience visual difficulties associated with brain damage, and Søren Petersen has several different visual difficulties: Imagine that you had a patch over the right part of each eye and could only see the left half. At the same time hold a flap down from above, so you only see the bottom of both eyes. Now you see the words only with the left lower half of both of your eyes. Then turn the colours off so you only see different shades of grey, and then turn the light down to only twilight strength. That is how Søren Petersen's vision is today.
With this vision he sits in front of a light panel with two parallel rows of lamps of different colours. His nose is 30 centimeters from the panel, and the panel length is tuned so that the distance equals the width of the field of view of a person with normal vision.
Gitte Haldbæk uses her computer to turn on different sequences of lights on each side of the panel. Søren Petersen has to look at them and say whether or not they are the same on each side. Whether they produce the same figure, for example.
This method has taught Søren Petersen to turn his head so he can get the most out of the visual field he has left. Since he does not see with the right part of each eye, he must turn his head well over to the right to see - with the left part of his eyes - what is over on the right.
In another training sequence Gitte Haldbæk turns on the lamps on the outer edge of the panel, and then Søren Petersen has to tell when he can see that they are turned on.
"Can you see the red?" She asks at one point.
Søren Petersen laughs: "No, but I can see there is light in it, if that's what you mean?"
Gitte Haldbæk for a moment has forgotten that Søren Petersen cannot see colours.
Better to orientate themselves
"The NVT method teaches Søren to turn his head far to the right to see things that are on the right and to put his head back to see what is above the center of his field of vision. This means that he will be better able to orientate himself and can walk the streets without being afraid of walking into things or overlooking movements in the traffic”, Gitte Haldbæk explains.
"Now I can very easily see that there are other people on the road coming towards me, or if there is anything else I should be aware of. But I can still be surprised by anything that comes out from the side. It takes time to learn. And I’m constantly lifting my head up and back, so you could say that I look like someone who thinks I’m better than everyone else”, Søren Petersen says with a grin.
He never leaves home without his sense of humour, although brain damage sometimes makes life seem heavy.
Where did I put the keys?
Søren Petersen’s brain injury means he has difficulty remembering, and that annoys him.
"I have always had a photographic memory. It was me, friends called when they had forgotten a phone number. Now I put my keys down and if I do not put them in exactly the same place as last time, they are gone. It may take a long time to find them again, "says Søren Petersen.
The memory has improved with time and training.
"In the beginning I almost redecorated the entire kitchen when I emptied the dishwasher. Luckily I don’t anymore, "says Søren Petersen.
His faltering memory makes great demands on life at home. A rubber band on the toothbrush tells him that it's his - for when you cannot see colours and have trouble remembering, it can be hard to find your own toothbrush. Things need to be in certain places, and he relies very much on his Mayland calendar.
A ride on the bike was unheard of
The combination of a poor memory and poor eyesight makes it hard to do many things that used to be everyday tasks, e.g. a ride on the bike. The trip home to Herlev Midpoint is short, and Søren Petersen has driven it more than a thousand times. Now it is equivalent to a trip up a mountain with at least one hand tied behind his back. Søren Petersen's poor eyesight makes it hard for him to judge distances and orientation, and his failing memory means that he is lost if he forgets the way. Although he knows some of the way, he cannot just read the landscape as you normally would and find the right way. He does not have a file drawer inside his brain with relevant information he can use when he loses orientation.
So it was like balancing right on the edge, when Gitte Haldbæk wanted him on his bike again.
"My girlfriend was very worried and I even felt that it exceeded my limit in every way. Was I ready for it?" Søren Petersen asks.
"We took it quietly. First we took small trips on the road in front of our house. Just back and forth. Then a little longer, and finally we went all the way. Today Søren Petersen rides his bicycles on his own, while I wait for him down at Herlev Center, so we know when he has arrived, and how much time it takes for him to get there", Gitte Haldbæk says.
"The progress has been very impressive", Søren Petersen adds. And although he soon stops at IBOS, he will continue the training, both with the bike, with the physical training and with challenging himself.
"When a man has so much motivation as Søren Petersen has, the NVT method can reach very, very far", says Gitte Haldbæk.
Visual Brain Course
Before the blood clots Søren Petersen worked with controlling fire-fighting equipment in schools and institutions. This job he has lost, but he dreams of being ready to work again. In a short time he will finish his course at IBOS, where he has worked with NVT-training, partly to get to read again. The course he has received is called the Visual Brain Course, and here Søren Petersen has been in the hands of a number of specialists, he has been trained in reading and the use of computer and iPad, and he has trained intensively to be able to get safely around with the vision he has today.
Waiting for clarification of his readiness to be able to work again, where he gets to explore what he can and what he cannot do, Søren Petersen himself has already spoken to the recycling center close to where he lives, and they may be able to employ him.
"I know the location, I can smoothly find my way around there, and I even know the staff. So you always get the same tales from those who come to the recycling center to empty their trailer of junk, but then it's lucky for me I cannot remember", Søren Petersen says with a wry smile.
A summary of the presentation given on the ECPVI in Bratislava, november 2014
‘A visual impairment is not just about seeing and watching. Get a view of the different aspects and dimensions of the emotional process’. A summary of the presentation given on the ECPVI in Bratislava, nov. 2014.
Heidi Deknudt is psychologist and psychotherapist in Gent (Belgium). She works for the organisation Solidarity Insight (Blindenzorg Licht en Liefde), for Sint-Raphaël, Retraining Center for adults with a visual impairment and has a private practice at home. She is a client centered and psychoanalytic therapist and specializes in trauma and grief.
This presentation is the result of a collaboration with the VU Amsterdam (The Netherlands) where Van Nispen R. set up a research project on stepped care for visually impaired older (55+) patients with anxiety or depression. In this article one can find the starting point of a Flemish translation of the stepped care model, which is meant to be used by the social workers and occupational therapists who visit the clients of Solidarity Insight.
In this model, there are four phases. After a period of watchful waiting (phase 0), which is mostly the waiting time between a request for help and the first visit of the social worker, one can address the self-resilience of the person. When there is no progress in the emotional process, there are interventions the caregiver can use. In a final phase, when this doesn’t help enough, the client is referred to a psychotherapist or to a doctor for medication.
During the first phase (addressing self resilience) it is very important that the client gets the chance to tell and retell his or her story. By telling, one can recuperate and see things in perspective. Often there is a spontaneous adaptation. Adaptation is the sum of assimilation (changing ones own opinions, thoughts…) and accommodation (changing the environment). Important factors in this process are the (absence of a) social network, the capacities and coping mechanisms, a resilient way of coping… Psycho-education about grief is very important, the process of losing your sight/your eyes affects your being in all aspects: bodily, emotional, behavioral, relational and in the domain of giving of meaning/belief/spirituality. Points of attention can be the regaining of control, of self-esteem and of perspectives for the future. Often the sense of fairness is damaged: ‘Why does this happen to me?’
In the psycho-education, one can refer to the different stages (E. Kubbler-Ross) and tasks (Worden) of grief:
- Accept the reality of the loss
- Work through the pain of grief
- Adjust to a new environment after the loss
- Reinvest energy into the Self and the Life after the loss.
This model gives perspective for the client (there will be a period where I feel better), but acceptance is very difficult, it is better to speak in terms of adaptation to the loss. When it is to gradually loss of the sight (progressive eye disease), this gets more complicated of course. Another model that can be explained is the dual process model of Stroebe and Schut. In the grief process there is a loss-orientation (the pain, the sadness, the feeling of dependency…) and a restoration-orientation (life goes on, one has to learn again to cook, to use the bus, to ask for help…). A normal grief process exists in the oscillation between these two poles.
When the social worker/occupational therapist sees that the client doesn’t make progress in the emotional process, there are specific points of attention for the caretaker. Involving the family members in the psycho-education can be very helpful, to normalize the feelings of the client, but also of the family members. For them too, it is an adaptation. By learning new skills (computer, mobility, ADL, Braille…) the client gets hope and new perspectives. It also helps in maintaining or building up a social network, although this can be a difficult one if there was no network before. Relaxation exercises can help to learn how to stop depressive thoughts and anxiety. The caretaker can help the client to give attention to and dare to dream about positive things.
When one sees the blocks in the process, the caregiver can use specific interventions (phase 3). When referred to the dual process-model, one can see that a lack of oscillation between the two poles means a blockage. When the client gets stuck in the loss-oriented pole, there is a risk of chronic grief; in the other case (restoration-oriented) there is a risk of denied or delayed grief.
As a person with an impairment, you get more dependent on other people, this comes back to the style of attachment. Someone with a secure attachment can ask for help, there is trust and reciprocity, however it is difficult. Someone with an anxious-preoccupied attachment wants to be completely emotionally intimate with others, they feel themselves dependent on others. Someone with a dismissive-avoidant style of attachment wants to be independent and prefers not to ask for help.
There can be extra attention given to the maintaining or building up of a social network. Besides that, the question of identity (who am I, who can I become, how can I be of worth for other people?) can also be a theme in the process with the caregiver. This can also imply personal growth, choosing other priorities, valuing other things…
When a client doesn’t move on in the emotional process of adapting to the loss of vision, a referral to a psychotherapist and/or doctor (phase 4) can be important.
- Kübler-Ross, E. & Bilger, C. (2008). On death and dying. Oxford: Taylor & Francis Ltd.
- Stroebe, M. (2009). Beyond the broken heart: mental and physical health consequences of losing a loved one, Oratie. Utrecht: Universiteit Utrecht.
- Stroebe, M. & Schut, H. (2002). 'Meaning making and the dual process model of coping with bereavement'. In: Neimeyer (ed.), Meaning reconstruction and the experience of loss. Washington: APA.
5th European Conference on Psychology and Visual Impairment (ECPVI 2014)
The 5th European Conference on Psychology and Visual Impairment was successfully held on 20 – 21 November 2014 in Bratislava, Slovakia. It was organized by the International Council for Education and Rehabilitation of People with Visual Impairment - European Region in cooperation with the Slovak Blind and Partially Sighted Union and the Faculty of Education, Comenius University in Bratislava. Distinguished researchers, psychologists, health, social care and education professionals attended the conference from various European Countries meeting in order to exchange knowledge, information and best practices regarding people with visual impairments in the psychological context.
You are strongly encouraged to visit the following website in order to become familiar with and download information concerning the conference outcomes such as a printable and accessible book of abstracts, as well as, material pertaining to keynote speeches, workshops and plenary sessions http://www.unss.sk/ecpvi/.
Conference: New methods for diagnosing and developing visual perception in children with disabilities
EDA and Faculty of Humanities of Charles University in Prague cordially invite you to a professional conference to be held on the 25th anniversary of early care in the Czech Republic
New methods for diagnosing and developing visual perception in children with disabilities
Date: June 18, 2015
Venue: Faculty of Humanities of Charles University, U Krize 8, Prague 5, ZIP code 158 00
- Dr. Lea Hyvärinen, MD, Ph.D., FAAP (Finland)
- Drs. Marjolein Dik (Netherlands)
- Dipl. Päd. Gertrude Jaritz (Austria)
- PaedDr. Jana Vachulová (Czech Republic)
Programme 9:00 – 17:00
- History and present of early care
Lecturer: PaedDr. Jana Vachulová
- What happens to visual information on the way from the eye to the brain cortex
Lecturer: Dr. Lea Hyvärinen, MD, Ph.D.
- Neuropsychological assessment of visual and tactual processing funcions: perception, attention and visual/tactual/motor integration
Lecturer: Drs. Marjolein Dik
- From black and white doll to apps ...
Lecturer: Dipl. Päd. Gerti Jaritz
We ask participants to confirm their attendance by completing the form on www.roksedou.com by 15. 5. 2015.
Simultaneous interpreting will be provided during the whole of the conference.
Admission: 950 CZK / reduced fee for students 200 CZK.
Detailed information about the conference is available at www.roksedou.com