ICEVI European Newsletter

ISSN Number 2666-1527

Special Edition of ICEVI European Newsletter, October 2021
Proceedings of the 8th ECPVI- European Conference on Psychology and Visual Impairment
Vision Prague 2021 Online
1-2 July 2021

Coordinated by     Andrea Hathazi      ahathazi@yahoo.com

Edited by             Martina Malotova     malotova@skolazrak.cz and

                           Katerina Gibalova     gibalova@skolazrak.cz

Designed by         Istvan Mozes          webmaster@icevi-europe.org

If you want to subscribe for ICEVI European Newsletter, or to stop receiving it, please send an e-mail message to: webmaster@icevi-europe.org.

1 PREFACE

2 TOPIC OF THE CONFERENCE AND MAIN AIM

3 PARTICIPANTS

4 CONFERENCE DESIGN

5 PROGRAMME

6 CONFERENCE INTRODUCTION BY ONDŘEJ CERHA AND MICHAEL BERGSTRÖM MÖRMAN

7 WELCOME SPEECH FROM THE VICE PRESIDENT OF CZECH SOCIETY SONS

8 WELCOME SPEECH FROM ICEVI-EUROPE PRESIDENT

9 WELCOME SPEECH FROM THE BOARD MEMBER OF CENTRAL EUROPEAN COUNTRIES REGION

10 ALL FULL-TEXT PAPERS OF ORAL AND POSTER PRESENTATIONS FROM PRESENTERS

10.1 My CVI

10.2 EDA PLAY: Fun and vision development for children with CVI

10.3 Students with special education needs – assessment of the situation and possible intervention

10.4 Students with visual impairment at Charles University

10.5 Children with CVI: Opportunities and Challenges in Early Intervention

10.6 The impact of visual impairment and comorbid mental disorders on functioning in essential life domains: outcomes of a qualitative Delphi study

11 ORAL PRESENTATION

11.1 Martina Malotová, Low vision therapist: The attention focus effect in visual impairment children´s gait

11.2 Dagmar Moravcová, Low vision therapist, CVI in children with dysphasia

11.3 Rob Van der Linden, Sunsheyene Project

11.4 Edine van Munster, Detection of depression and anxiety in adults with VI

11.5 Andrea Hathazi, Carmen Costea-Barlutiu, Assessing the needs of families with children with MDVI regarding early intervention

11.6 Carmen Costea-Barlutiu, Andrea Hathazi, A comparative analysis of the needs of professionals and parents of children with MDVI regarding early intervention

12 POSTER PRESENTATION

12.1 Helena Štrofová, A device for use by special educational needs teachers for the early detection of vision disorders of the ocular apparatus

12.2 Kateřina Kroupová, Veronika Růžičková, Development of imagination through tyflografic representations as a facilitating elements in independent movement and spatial orientation

12.3 Martin Vrubel, Accessibility of Czech primary schools for students with visual impairment

13 CONFERENCE CLOSING

14 HOMEPAGE

15 SUPPLEMENT – BACKSTAGE FOTO

ICEVI European Newsletter

ISSN Number 2666-1527

SPECIAL EDITION OF ICEVI EUROPEAN NEWSLETTER

Proceedings of the 8th ECPVI- European Conference on Psychology and Visual Impairment, Vision Prague 2021 Online

„REAL LIFE (IN) DEPENDENCE“ 1.-2. July, 2021

Editors: Martina Malotova & Katerina Gibalova, Prague, 2021.

Primary And Low Secondary School for children with Visual Impairment in Prague;

University Palacky in Olomouc, Faculty of Physical Culture, Department of Kinantropology and Faculty of Pedagogy, Department of Pedagogy.

1 PREFACE

The focus of the 8th European Conference on Psychology and Visual Impairment „Real life (In) dependence“ was on how to support visually impaired persons to reach their full potential and achieve true independence in their daily life. This conference was hosted by Primary and Low secondary School for visual impaired and Special Centrum for visual impaired children, located in Prague. The organization team worked closely with representatives of ICEVI EUROPE, cooperated with colleagues from the ENPVI team, the European network for psychologists and related professions working in the field of Visual Impairment.

The whole event was fundamentally supported by the capital city of Prague, the founder of the organizing organization. The chairwoman for education and training of the Prague City Council took over the auspices of the event.

The conference was originally planned for November 5-6, 2020, in a full-time design, but due to unfavorable global developments in connection with covid-19, it was moved to July-July 20, 2021. During the preparatory work, a change was made again, in the month of March 2021, based on a discussion with consultants, the conference from the ranks of ICEVI EUROPE, resp. ENPVI decided to change the design to an online form.

Members of the organizing team and consultants throughout the event

Hans Welling, President of ICEVI-Europe

Beáta Prónay, Board Member of ICEVI-Europe

Martha Gyftakos, Executive Assistant to the Presidency of ICEVI-Europe

Martina Malotová, Board member of the organizational team

Anna Jílková, member of the organizational team

Katerina Gibalová, member of the organizational team

Elke Wagner, member of the steering committee of the ENPVI professional interest group

Michael Bergström Morman, member of the steering committee of the ENPVI professional interest group

Bo Kjærgaard Andersen, member of the steering committee of the ENPVI professional interest group

Martin Trefný, webmaster, member of the organizational team

CONFERENCE TARGET GROUP

Professionals from a range of disciplines including therapy, psychology, education and other fields concerned with vision impairment across all ages.

2 TOPIC OF THE CONFERENCE AND MAIN AIM

(In) dependence life of people with visual impairment

A major concern in leading a life with visual impairment is the issue of (in)dependence. What does it mean to be free and independent? This is the key question for our conference in Prague. How best to help blind and visual impaired people on their way throughout their life? How do psychologists, special educators, medics, visual therapists, and others help solve the problems faced by individuals with VI and their families

and how can they maintain cooperation across the different specializations? What does independence mean? Is it a universal, or subjective idea? Can we evaluate it, or should we evaluate it?

These are just a few examples of themes that we discussed, explored and presented in our workshops, presentations, and discussion panels. During the conference we wanted to monitor assumptions about the skills that specialists need to have for their professional work, because it is important for our clients, patients, families of clients and everyone who is working with blind or impaired people. It was a great opportunity to exchange knowledge, experiences and skills with colleagues.

3 PARTICIPANTS

The conference was attended by a total of 54 colleagues, of which 22 were active participants from nine European countries. The number of participants from the Czech Republic, from the country of the organizing organization, prevailed. Colleagues from Slovakia, Romania, Bulgaria, Slovenia, Poland, Denmark, Sweden, the Netherlands and the United Kingdom also joined.

Active participants presented a total of 13 lectures and presented 3 posters. The conference participants agreed to publish their lectures on the conference website and signed the GDPR statement.

4 CONFERENCE DESIGN

The conference was in the form of online design as a two-day event. Conference language was English. The technical support was concentrated in the place of the organizing, where a virtual broadcasting studio was set up. In order to improve the quality of audio and video transmission and to eliminate possible delays and ambiguities in transmission, two virtual studios were created. First for active participants, including speakers, and the second one for passive listeners. The entire transmission is translated from Czech into English. Each conference day was followed by an online evaluation meeting to evaluate the course of the day in order to eliminate undesirable elements that appeared during the event.

The conference was technically supported by AV Media, Czech Republic www.avmedia.cz, in the ZOOM environment.

5 PROGRAMME

VISION PRAGUE 2021 – Conference´s Programme
Thursday, 1 July 2021
8:30 – 9:30	Opening on- line registration
9:30 – 9:40	Conference introduction by Ondřej Cerha and Michael Bergström Mörman
9:40 – 9:45	Welcome speech from Prague SONS Vice President	Mr. Rudolf Volejník
9:45 – 9:50	Welcome speech from ICEVI Europe President	Mr. Hans Welling
9:50 – 9:55	Welcome speech from subregion Central European countries	Mrs. Beata Pronay
Topic 1. Quality of life and visual impairment
9:55 – 10:00	Introduction to the Topic 1 Quality of life and visual impairment	Ondřej Cerha
10:00 – 10:30	Acceptance of disability and perceived life’s meaningfulness among people with visual impairment.	Ondřej Cerha
10:30 – 10:50	Children´s with visual impairment Gait analysis	Martina Malotová
10:50 – 11:10 Coffee break
11:10 –11:40	Early intervention	Carmen Costea Barlutiu
11:40 – 12:10	Identification of depression and anxiety in adults with visual impairment (the patient's perspective)	Edine van Munster
12:10 – 13:10 Lunch
13:10 – 13:40	The impact of visual impairment and comorbid mental disorders on functioning in essential life domains based: outcomes of a qualitative Delphi study	Hilde van der Aa
13:40 – 14:10	The role of season and sunlight in self-reported depressive symptoms by adults with visual impairment	Rob van der Linden
14:10 – 14:40	Needs of parents and professionals in early intervention	Andrea Hathazi
14:40 – 15:00	Closing 1 st Conference´s day	Ondřej Cerha

Friday, 2 July 2021
Topic 2. Cortical visual impairment (CVI)
8:20 – 8:50	Opening registration
8:50 – 9:00	Introduction to the second Topic Cortical visual impairment (CVI)	Michael Bergström Mörman
9:00 – 9:30	Children with CVI: Opportunities and Challenges in Early Intervention	Halka Tytykalová
9:30 – 10:00	My CVI"; a serious game that can be used in psycho-eduction for children with CVI, developmental age 6-12 years	Mariska Stokla-Wulfse, Yvonne Kruithof
10:00 – 10:20 Coffee break
10:20 – 10:50	CVI in children with dysfazia; the team work model: Low vision therapist, speach therapist and psychologist	Martina Malotová, Dagmar Moravcová
10:50 – 11:20	EDA PLAY: Fun and vision development for children with CVI	Markéta Skalická
Topic 3. Poster´spresentation
11:20 – 11:30	Development of imagination through tyflografic representations as a facilitating elements in independent movement and spatial orientation Design and evaluate the reliability and the usability of a tool for the early detection of visual disorders at the level of the visual apparatus in children with cognitive deficits for special pedagogues Accessibility of Czech Primary school for students with visualy impairment	Kateřina Kroupová, Veronika Růžičková Helena Štrofová Martina Vrubel
11:30 – 12:30 Lunch
Topic 4. Education of children and adults with visual impairment
12:30 – 12:40	Introduction to the third Topic Education of children and adults with visual impairment	Michael Bergström Mörman
12:40 – 13:10	Students with visual impairment at Charles University	Lea Květoňová, Pavlína Šumníková, Anna Kubíčková
13:10 – 13:40	Students with special education needs – assessment of their situation and possible interventions	Anna Kubíčková, Pavlína Šumníková, Lea Květoňová
13:40 – 14:00	Conference´s closing	Mariana Čapková, representative of the Prague´s government Michael Bergström Mörman - ICEVI Europe

6 CONFERENCE INTRODUCTION BY ONDŘEJ CERHA AND MICHAEL BERGSTRÖM MÖRMAN

Both conference days had owns moderator. The first day was moderated by Mr. Ondrej Cerha, psychologist and Ph.D. candidate social psychology, the next day moderated by Mr. Michael Bergström Morman, Lic. psychologist, specialist in educational psychology. Both moderators did a great job and thanks to them, the individual topics were always presented in the concept of impacts on everyday life.

7 WELCOME SPEECH FROM THE VICE PRESIDENT OF CZECH SOCIETY SONS

Mr. Rudolf Volejník, Vice President of the Czech Society SONS (United Organization of the Blind and Visually Impaired in the Czech Republic), spoke at the beginning of the conference, mentioned the importance of ICEVI EUROPE's work and expressed satisfaction that the Czech Republic has the honor to establish and strengthen ICEVI - EUROPE ideas. He spoke about the need to perceive the daily needs of all people, regardless of disability, and warmly supported the main theme and idea of our conference. He spoke of SONS as an organization helping to spread information about the needs and opportunities of the blind and partially sighted. He expressed his idea in connection with the main topic of (In) Dependence, as the possibility for visually impaired people to learn, discover and participate in the development of society.

„Dear ICEVI Officers, dear presenters, dear Conference participants, ladies & gentlemen, I feel truly privileged to be able to address your conference on behalf of Czech Blind United, the long-term partner of ICEVI through our full membership in the European Blind Union and the World Blind Union. This Conference actually represents a continuation of the ICEVI General Assembly, held in conjunction with the 10th General Assembly of the WBU. We are all on-line, which is NOT what was originally desired and intended; however, this unwelcome circumstance will not make your Conference less successful than under regular conditions. Czech Blind United, the representative voice of blind and partially-sighted people of this country, welcomes initiatives of the ICEVI, particularly, in the field of combined disorders, reflected and well-represented among the topics of your Conference. We are, as a rule, not experts – we may be users and beneficiaries of your services, or even mentors who are expected to give guidance. Though blind people are not totally disregarded, the main focus of your conference is concentrated on low vision persons in the widest scope. Czech Blind United regards this policy as correct because our membership has been made up primarily by low vision or partially-sighted persons who naturally need proper educational attention. The Conference provides ample evidence of this beneficial trend.

In spite of not being a special educator by profession, I have been involved both directly and indirectly with education of the blind for the last 40 years. My idea of independence (the motto of your Conference) extends far beyond your own objectives: you are here to educate, to train, to instil alternative techniques in order to enable blind and low vision people to look for their own place in the sun; Czech Blind United and other similar organizations all over the world are here to advocate and to help find gainful jobs for people you have educated. I wish that your conference were thoroughly successful, beneficial and useful both for the community of blind and partially-sighted people and your own science and expertise environment.I hope to meet you in person at one of your next events. Thank you“.

8 WELCOME SPEECH FROM ICEVI-EUROPE PRESIDENT

The conference was significantly supported by the introductory speech of the President of ICEVI -EUROPE, Mr. Hans Welling. His words encouraged the whole team and significantly contributed to clarifying the main topic of the whole conference. The President emphasized the need for the independence of the visually impaired and pointed out the possibilities of their application in everyday life. He said that across European countries, but also around the world, support and discussion of topics related to helping professions is irreplaceable. „Dear colleagues. I would like to begin by congratulating the organising committee and, in particular, Martina, with whom we have had a lot of contact in the preparation of this conference. It is your eighth conference due to Covid 19 now digital. I am glad Covid did not stop you from organizing this conference. Congratulations again. I remember the first tentative meeting led by Peter Rodney. Now the eighth conference with 58 participants and with interesting presentations. Your professional interest group is an example for other professions in Europe. You know that Icevi-Europe is a strong supporter of professional interest groups. It is very important to know your colleagues in Europe and to share knowledge and experiences.The titles of the presentations at this conference also show that. CVI, disability acceptance, impact of impairment on life domains, the needs of parents, early intervention, possibilities of treatment, Rehabilitation and so on. This brings me to the ICF. the international Classification of Functioning, Disability and Health, known more commonly as ICF. The ICF provides a standard language and framework for the description of health and health related states. ICF is named as it is because of its stress on health and functioning, rather than on disability. ICF is a tool for measuring functioning in the society, for inclusion no matter what the reason is for one's impairment. I mention the ICF because I think it is so incredibly important for our support of people with visual disabilities, to know the interaction between health condition, body functions and structure, participation and contextual factors It is a tool to arrive at a good support plan for individuals with disabilities , for scientific research but it is also a planning and policy tool for decision makers. I am thinking about the ICF for a moment because I believe that your professional interest group plays an important role in the use of this tool, so that we have a common way of thinking, a common language between all disciplines when it comes to Functioning, Disability and Health. I wish you an inspiring conference and good contact with your colleagues. Unfortunately, a visit to Prague is not possible now. Good luck supporting Real Life Independence. I hope that we will meet at the 10th European Conference next year, which is expected to take place in Romania. Thank you“

9 WELCOME SPEECH FROM THE BOARD MEMBER OF CENTRAL EUROPEAN COUNTRIES REGION

Mrs. Beata Pronay, representing ICEVI - EUROPE in Central European countries, encouraged participants and speakers, talked about the development of the idea of organizing conferences on the needs of visually impaired people and wished the conference a successful process.

„In the name of the Board of ICEVI-Europe I greet you as the representative of the Central European Countries and in this position my special task is assisting ECPVI and rehabilitation special interest group. I’m a special education teacher, psychologist and rehabilitation specialist for visual impairments.

I was present in all ECPVIs since the first occasion. You might not know the line of these conferences:

2006 COPENHAGEN – ENPVI (European Network for Psychologists and Related Professionals

2008 HUIZEN

2010 VILNIUS

2012 HEIDELBERG

2014 BRATISLAVA

2016 BUDAPEST

2018 THESSALONIKI

2020/2021 PRAGUE

We should mention at first place the important role of the initiator of these events Peter Rodney. He suggested to establish the network of psychologists and related professionals in Europe who are working with and for individuals with visual impairments. He was the organizer of the first meeting in Copenhagen and was one of the members of the steering group for many years together with Peter Verstraten. Peter Rodney from IBOS, Copenhagen, Denmark is a psychologist who was active in this filed for many years. His co-organizer partner was Peter Verstraten, psychologist formerly at VISIO, now at Robert Coppes Foundation, The Netherlands. They together were the motor of this network and the conferences organized biannually for many years.

Since 2014 ECPVI Bratislava, Elke Wagner PhD, Germany, joined them in the Steering group and in 2018 ECPVI Thessaloniki, Michael Bergström-Mörman, Sweden and Bo Kjærgaard Andersen, UK completed their group.

ENPVI - ECPVI

ENPVI (European Network for Psychologists and Related Professionals) and the conference ECPVI (European Conference for Psychologist and Related Professionals for Visual Impairment) have the mission to connect us - our small family of professionals working on the field of psychology and related professions for visual impairments in Europe.

Among the professionals of this field an even smaller but strong and connected group is ours of psychologist and related professionals, thanks to this network and conferences.

We are different: internationally colourful, and active in sub fields of psychology & related professions for visual impairment.

We are common: in our interest and commitment for psychological wellbeing and support of the mental health of individuals with visual impairments. We are facing the same challenges during our daily work.

Let’s keep together, build new contacts, and support each other in the future years as we did in the past 15 years.

Thanks for the Steering group and for the national organizers in Prague to put this lot of effort into the preparation of this online conference and give us opportunity to meet and share knowledge again even in this difficult time due to the pandemic!

We hope that next time we can meet personally!

I wish you a great Conference!

10 ALL FULL-TEXT PAPERS OF ORAL AND POSTER PRESENTATIONS FROM PRESENTERS

Drs. Mariska Stokla, Child psychologist, mstoklawulfse@bartimeus.nl

Drs. Yvonne Kruithof, Educational psychologist, ykruithof@bartimeus.nl

Bartiméus, The Netherlands

My CVI is a serious game for psycho-education for children with cerebral visual impairment (CVI) in the age of 6-16 years old. When you are diagnosed with CVI there are disturbances in the visual functions as a result of brain damage or abnormal development of the brain. The problems are often not in the eye itself but in the processing of visual information in the brain. CVI is the most common cause of visual impairment in childhood (about 30%) and has many manifestations depending on the area in the brain that is damaged. Therefore it is complicated to understand for parents, children and their teachers and children with CVI experience a lot of misunderstanding.

Through the use of psycho-education problems in social-emotional development can be prevented. In 2018, the psycho-education program My CVI was developed in answer to the questions from children, parents and teachers. The aim of My CVI is to give children insight into CVI, the influence of CVI on their functioning and how they can deal with this in their daily lives. They also learn there are other children with CVI, develop a sense of self-esteem and learn how to participate in school and in leisure time. My CVI consists of a digital series of 8 lessons on 8 topics related to CVI (e.g. visual recognition of objects, reading, recognizing people and emotions). In each lesson children who have CVI themselves talk about how they deal with these topics. The children who play the serious game watch the interviews and indicate the videos that are recognizable to them and which advice suits them. This results in a personal playlist which participants can use to explain to others what their impairment entails.

In 2019 we started a study into the effectiveness of the serious game My CVI. Thirty-nine children (19 boys, Mage = 10.6, SDage = 2.1 years) with diagnosed CVI (90%) or symptoms of CVI (10%) participated. Two-third of children were enrolled in primary education (58% mainstream, 42% special education), and 1/3 in secondary education (31% mainstream, 69% special education). Eighty-five percent of participating children had had their visual impairment since birth. Almost 4/5 of participating children (79.5%) had additional impairments besides their visual impairment (most common: 54% physical impairment, 13% intellectual impairment). Before the start of the program (T0), after finishing the game (T1) and three months later (T2) they and their teacher filled out several questionnaires. The primary outcome measure was improved knowledge on CVI. Secondary outcome measures were self-concept (SDQ; Marsh, Craven & Debus, 1998), well-being (HRQoL, (Simeoni et al., 2007); Cantril ladder, (Cantril, 1965); PERIK (Mayr & Ulich, 2009) and coping (SCQ; Röder, Boekarts & Kroonenberg, 2002). In addition, children were asked about their subjective evaluation of the serious game and a selection of participants (14 children, 8 teachers and 8 parents) participated in qualitative interviews.

Data-collection for the follow-up assessments is ongoing. Preliminary analyses into changes between pretest and posttest show that children’s knowledge on CVI significantly improves (Mbefore = 9.44, SDbefore = 6.13; Mafter = 14.63, SDafter = 3.94, t(32)=5,80, p < .001). Children’s improved knowledge was associated with less negative feelings regarding their visual impairment (r = .356, p = .045). So far, no changes in the other secondary outcome measures have been found. This could change with the availability of the follow-up data as we expect that changes in self-concept, well-being and coping will start with improved understanding of the impairment and may take more time to become visible.

Qualitative data show that overall children enjoyed playing the serious game (80.6%) and rated the discussed topics as recognizable and relevant to their situation (77.8%). The subjective statements corroborated the quantitative data by showing that 74% of the children answered their understanding of CVI has improved, as well as their knowledge on available solutions to deal with their impairment (81%). In addition, a major effect of participating in the serious game is that 100% of the children replied they now realized there are children with comparable problems. Translating increased knowledge on CVI into being able to better explain to others what CVI means is still relatively difficult: just slightly more than half of the children (55.6%) responded positively to this statement. Parents and teachers painted a similar picture in the interviews.

This Fall all quantitative data on the effect-study into My CVI will be available and results will be further analyzed and presented in a peer-reviewed international journal.

More information:

Film What is CVI? www.youtube.com/watch?v=W6OwI9Atqxg

Animation CVI at a young age (explanation for children) www.youtube.com/watch?v=ThAe3Wc3U2o

Dr. Markéta Skalická, low vision therapist, and Mgr. Ivana Bajgarová, app development coordinator

EDA cz, z. ú., Czech Republic

VISION DEVELOPMENT METHODOLOGY

AND NEW TECHNOLOGIES IN THE PROCESS OF VISION STIMULATION

The EDA PLAY apps are designed for children with visual and multiple disorders to help them train their vision and fine motor skills. These games are tailor-made for children with central visual impairment (CVI) and developed under the supervision of early intervention experts, low vision specialists, and the methodologist for the development of visual perception. The EDA PLAY apps family offers five games: The EDA PLAY, the EDA PLAY PAULI, the EDA PLAY ELIS, the EDA PLAY TOM, and the EDA PLAY TOBY. The last two are available for free for both iOS (iPad devices) and Android tablet devices.

Children with CVI often have difficulty understanding new subjects or situations. These children need to be repeatedly acquainted with the seen object, picture, toy. In the EDA PLAY apps, there are game situations that can be easily imitated by a parent or a teacher in real life and help children understand the surrounding real world and its depiction through illustrations and games.

Creators of the EDA PLAY apps from the non-profit organization EDA cz, z. ú. have more than 30 years of experience in the fields of early intervention and vision stimulation. The experiences of these professionals are reflected in the apps.

THE EDA PLAY APPS: TAILOR-MADE FOR CHILDREN WITH CVI

Authors of the EDA PLAY apps are inspired by the needs of CVI children and their ways of playing and interacting in everyday life. These apps respect their needs – such as the preference for one or two colors, bright, bold colors – the game scenes work especially with red, yellow, orange, the colors most preferred by children with CVI. These games also respect the latency of the response to a visual stimulus. The apps contain slow animations so that children have time to process the information: the game provides sufficient time to present the image on the display and sufficient time for children to react.

THE EDA PLAY APPS: HOW TO SUPPORT THE MOTIVATION TO PARTICIPATE IN THE GAME

When a touch response is expected, the child is encouraged by the pulse animation of the image, along with a sound or verbal encouragement. EDA PLAY apps respect a common problem with complexity - the perception of a complex object, the perception of multiple objects in one scene, or a complex background. The tailor-made apps for children with CVI, use a black background and pictures that have a simple, typical shape, of one color, or a maximum of two colors and have a clear contour in terms of shape.

Children with CVI often have difficulty perceiving new objects. They focus better on familiar objects. Therefore, in the latest EDA PLAY TOM game, pictures from the older EDA PLAY TOBY app are used. The child will accept the new game better because it already contains a familiar animal, a familiar car with a familiar sound.

The EDA PLAY TOBY app contains tasks graded according to difficulty. This game starts with animations. The child does not have to actively touch the screen, just watches objects on the tablet screen. Then come the tasks, where the child is encouraged to touch. After touching the screen, the child can see the change. The EDA PLAY TOM app responds to touch anywhere on the tablet screen. In the other EDA PLAY apps, there are also tasks where the child has to touch a specific place or a specific object on the tablet display so we can train eye-hand coordination.

EDA PLAY TOBY

EDA PLAY TOM

These games are designed for both iPads and Android tablets and are available for free. So if you have a tablet device, you can try it in practice. In addition to children with CVI, these apps help to train the vision and fine motor skills of children with attention disorders, communication disorders, and developmental delay and can often be used for stimulation in occlusive therapy of children with amblyopia of one eye.

As previously mentioned, when preparing these games, authors were inspired by real children. See more at www.edaplay.com/eda-play-tom and

www.edaplay.com/eda-play-toby

THE EDA PLAY APPS: HOW TO EXPAND THE GAME INTO THE REAL WORLD

Children with CVI often have difficulty understanding new subjects or situations. Our EDA PLAY games can help to understand the world around them. Children need to see objects repeatedly, a toy, a picture, and everyday things. Thanks to repetition they can understand them.

In the apps, there are game situations that parents or teachers can easily imitate by playing with real objects or toys, imitate real life, and help children discover the real world through pictures and games.

EDA PLAY ELIS

This game is inspired by Eliška, a girl with multiple impairments and CVI. Her mother was even part of the team that prepared the app. The game is inspired by Eliška´s interests. She likes to watch what is

happening in the household, she likes the sound of a bathtub filling and then draining. Or the sound of a washing machine. She has her assistance dog Sam, whom we also put as a picture into the game.

According to her mother: “Eliška has been using the iPad since preschool. I can say that thanks to the Pad and suitable apps such as EDA PLAY, she has improved her visual attention skills.”

It is easy for Eliška's mother to switch to viewing photos of the real Sam after a few tasks because Eliška knows him. Even for other parents, it is not difficult to use the pictures from the game in a new context, they can use the offered worksheets, or they can introduce the child to photos of other dogs from their surroundings. Baking a cake or washing clothes is also on offer. Even these activities can be imitated very easily by parents playing with real objects. See more at https://www.edaplay.com/eda-play-elis

EDA PLAY APPS AND WORKSHEETS

Worksheets give us the opportunity to involve siblings in the event. Children can use knowledge from the EDA PLAY apps in real 3D space and together create a new game with familiar realities and using manual skills according to the possibilities of visually impaired children. See more at

www.edaplay.com/activities

USEFUL FEATURES IN THE EDA PLAY APPS

FOR PARENTS, TEACHERS AND THERAPISTS

The Simulator of visual disorders is a special section in the EDA PLAY apps. It enables adults to better understand how complicated the world is for children with visual disorders. How to use this simulator: You are on the game screen of any EDA PLAY app. Hold the button on the right bottom corner for several seconds. Tap on the Info button, tap on the Visual disorders Simulator button. Choose one of the 8 visual disorders simulations. The Simulator uses the iPad camera. When the user chooses one of the visual disorder options, he/she can see through the iPad camera in the way that the child with a visual disorder perceives things. Each visual disorder is fitted with a short explanatory text. We take privacy seriously: The app does not save any data from the iPad camera. In the Info section of the apps, there are some more useful settings. A white frame can be set to distinctively demarcate the work surface of the tablet display.

Therapists, teachers, and parents can turn “on” the Skills section and observe the work (progress) of the child with the app. After installing the app, the recording of skills is switched off. The parent or therapist can switch the Skills recording on, or leave the Skills recording switched off. The skills log is only available on the iPad and it is not saved or sent anywhere outside of the iPad

CONTACT

Try the EDA PLAY apps with your clients. We will be happy if you share with us your experience, what worked for you, what the children liked, what comments you have and other ideas for future apps: info@edaplay.com

AnnaKubíčková, Pavlína Šumníková, Lea Květoňová

INTRODUCTION:

This text covers the pupils with visual impairment who are educated in schools with the use of supportive measures of varying degrees. Following text provides detailed analysis of support areas and each supportive measure designed for pupils in need of support in education due to the visual impairment and impaired visual perception.

Low vision in children

Children face a lifetime of vision difficulties which can affect their education, employment, and social opportunities. Many children benefit from the use of special services and devices to optimize the use of the vision they have. Parents and children voice similar quality of life concerns, highlighting the importance of social interaction, fitting in and maintaining independence. In addition, parents also emphasize the importance of family and community support, particularly in terms of providing good role models for their children, and the need for equity in the access to education. The economic impacts of low vision in children are also experienced by families and societies, particularly in the world’s poorest communities where most of childhood vision loss occurs. For the individual child, vision loss can have a major impact on their quality of life. Children themselves have expressed three main areas of concern in this regard (Corn, Erin, 2010).

1. Social interaction

“I can see so I get to see how the sighted people react around blind people and they don’t usually do visual signs. Usually, it’s in their voice... That’s generally a fact. I get to realise how „vision impaired people are treated compared to sighted people.”

“My social life isn’t really ultra-affected except the things like taunts, like “blindy” and....”

“Communication’s the biggest thing for me. It’s frustrating! “

2. Fitting in

“I try and be like everyone else, try and stick in the crowd and kind of, yes, be like them.”

“I didn’t really want any attention drawn to me at all.”

“I just want to be like everyone else.”

3. Maintaining Independence

“It’s also important to know how to ask for help, because you might feel too shy to ask for help, but you shouldn’t worry about it, because you are there to learn, and the teacher is there to teach you, or if you need help you should really ask them. “

“People are always telling me I can’t do what I want to do, and I think if I just agreed with them then I’d get nowhere.” (Corn, Erin, 2010).

The definition and classification of terms used in the Catalogue of support measures in the Czech Republic is introduced and defined in Czech educational system as followed (Tab. 1, 2, 3).

Tab. 1: Categories of severity of visual impairment according to the International Statistical Classification of Diseases

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1435919/

Tab. 2: Classification of Low Vision – medical model

Tab. 3: Classification on Low Vision – model WHO

Source: Vision 2020 WHO https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment

Support in the Czech Republic

The goal of most people is to enjoy a high quality of life through mutually satisfying interpersonal relationships and meaningful contributions in a manner that allows them to value themselves and to be valued by others. The purpose of low vision services is to help individuals with low vision maximize the use of their vision and learn to use their visual abilities as effectively as possible.

Optometrists, orthoptists and ophthalmic nurses serve as primary eye care providers. Clinical low vision therapists perform the following function:

-asses the clinical visual functioning,

-prescribes various optical and nonoptical devices,

-provides follow-up services such as training and examinations to ensure that visual skills are successfully integrated into the individual´s life.

Special pedagogical centres (SPC) with special education teachers provide training in visual skills and the use of devices, according to the level of educational support and corresponding recommendations from the Catalogue of support measures. SPC provide counselling services to pupils with disabilities as such and pupils with disabilities integrated in schools and school facilities, as well as to pupils with disabilities and disadvantages in schools, classes, departments or study groups with adapted educational programs, pupils with disabilities in special primary schools and children with profound mental disabilities. SPC performs its activities on an outpatient basis at the centre's workplace (Decree No. 72/2005 Coll.).

Legislative definition

The activities of special pedagogical centres (and other school counselling facilities) are regulated by the Education Act No. 561/2004 Coll., Decree No. 73/2005 Coll. and its amendment Decree No. 147/2011 Coll., especially Decree No. 72/2005 Coll. and its amendment Decree No. 116/2011 Coll.

DATA COLLECTION:

We contain detailed analysis of 7 pupils (tab. 4):

-From medical reports (visus to long and short distance, refraction, and diagnosis),

-From special pedagogical centres reports (adapted educational programs).

Tab. 4: Analysis from medical reports and SPC

Source: Cvachová, Šumníková, 2020

RESULTS:

The recommendations of supportive measures are in most cases in accordance with the characteristic manifestation of visual impairments. In the research survey has been found insufficient interconnection and cooperation of the special pedagogical and medical system (Cvachová, Šumníková, 2020). Another problem discovered was a different description of the pupil's difficulties by ophthalmologist and special education teacher.

Recommendation

Communication between eye practitioners and their patients (clients, pupils) and parents plays a critical role in use of supportive measures in pupils with visual impairment.

Lit.:CORN, Anne Lesley a Jane N. ERIN. Foundations of low vision: clinical and functional perspectives. 2nd ed. New York: AFB Press, 2010. ISBN 978-0-89128-883-1.

CVACHOVÁ, Aneta. Využívání podpůrných opatření u žáků s funkční poruchou zraku. Praha. 2020. Pedagogická fakulta UK, katedra speciální pedagogiky, 15. 09. 2020. Vedoucí práce: Pavlína Šumníková

Anna Kubíčková, Lea Květoňová, Pavlína Šumníková

INTRODUCTION:

Charles University seeks to enable all students’ equity in education and therefore it offers various types of support to students with special educational needs, i.e., to those who, due to a congenital or acquired health condition, require modification of study conditions for the purpose of the successful study.

University students with visual impairment (VIs) often face academic and social difficulties and thus develop their own means, methods, and skills to adjust to university life (Myers & Bastian, 2010). Many discover that they do not have sufficient learning skills necessary to meet academic demands. Thus, some students choose programs that do not fully match their potential, some must repeat specific courses several times or lengthen the period of studying at university for another semester or even added years (Gurb, 2000). Special education in the conditions of inclusive education at Charles University has been mapped in the years 2009-2011 (GAČR 406/09/0710).

Summary of the mapping:

One of the outputs: Experiences of university students with special educational needs

One of the categories: visually impaired students

Selection: 100% agreement - special conditions for performing the entry test

Need for assistance during studies (71%)

Other special measures (51%)

Expectations: access to presentations, editing texts, editing scripts, high administrative burden at the beginning of the study.

Key topics of the created publication (Hájková et al. 2013):

philosophical-historical and ethical reflection of differences in the context of the university environment

the forms of support available to university students with special educational needs and the experience of students with special support

assistance to university students with special educational needs

analysis of attitudes to differences in primary and secondary school pupils

attitudes of university teachers to inclusive education

Conclusions

Despite various difficulties and despite the obstacles related to their otherness, respondents did not resign to the desire for education.

A key prerequisite for successful university studies - acceptance of one's own identity - acceptance of one's own disability is for most students demanding and long-term process.

Optimism - a common element for most.

Even challenging situations can contribute to personal growth.

Support provided to special needs students at Charles University in Prague now:

Since 2012 the documentation of students with special needs has been a basic prerequisite for reception of contributions from the Czech Ministry of Education towards the increased costs of facilitating study for students with special needs.

The amount of the contribution is derived from the type of disability of the student (classification: A1 and A2 – sight impairment, B1 and B2 – hearing impairment, C1 and C2 – physical disability, D – specific learning disorders and E – psychological disorders and somatic illnesses) and field of study. Students are registered in the Student Information System at the student’s home faculty. The student’s profile contains a record of their disability (stating letter A–E).

Students are registered by contact persons in cooperation with department staff.

Students may be registered when all the following conditions have been fulfilled:

1. granting of informed consent by the student – the student grants their consent to data entry on their registration and allocation to the relevant category of special-needs being entered into the ‘Student’ system,

2. confirmation of the student’s disability – as follows: a) documentation of disability pursuant to Section 67 of Act no. 435/2004 Coll., the Employment Act, or b) documentation of invalidity of any degree pursuant to Section 39 of Act no. 155/1995 Coll., the Pensions Act, or c) ID card for disability of any degree pursuant to Section 34 of Act no. 329/2011 Coll., on the provision of benefits to persons with a disability, or d) documentation of specific learning disorder found on the basis of generally agreed results in generally agreed psychometric tests, or e) medical report on the results of a specialist medical examination in the case of persons with mental illness or with a chronic somatic illness, in the event that they are unable to produce the documents listed above,

3. functional diagnosis of student’s needs - the purpose of which is to identify the needs of the student over the course of their study considering the specific field of study and subsequently propose suitable mechanisms and modifications to the conditions of study in order to meet or compensate for these needs. A written record is made of the functional diagnosis, which then forms part of the student’s records as kept by the department. The student also receives a copy.

Functional diagnostics are carried out by faculty centres authorised for this task on the basis of an agreement between the contact person of the faculty to which the student is registered and staff of the specialist centre. An assessment of the functional diagnosis can also be carried out by a qualified staff member of the student’s home faculty. Data gathered during student documentation is treated as confidential, sensitive information.

Functional principle of classification

It is not a medical diagnosis itself that is decisive, but its practical impact on work and communication procedures, which must be chosen for students during their studies or research at the university.

The procedures are not decided by the students themself but are the result of an agreement concluded between the student, the professional service department of the university and the representative of the faculty, resp. field of study, based on examination of the student's communication possibilities and with the main goal to enable the formal and content passage through the field of study and the achievement of the necessary study, work or research goal.

Some categories do not appear in the classification, which for clear medical reasons are separated (e.g., Cerebral Palsy), because by applying the chosen principle, it should always be possible to project their functional impact into one of the groups listed.

DEFINITION OF TYPES OF DISABILITIES STUDENTS WITH SPECIFIC NEEDS FOR UNIVERSITY EDUCATION: visual impairment

Slightly visually impaired / Vision user (A1)

A person whose visual impairment still allows to use vision (including text), with common (including visual) document formats, Image editing consists of enlargement or other optical changes, no need to use screen readers.

Severely visually impaired / Touch / voice user (A2)

A person who works with either tactile printed documents or screen readers (in combination with a tactile display or voice output) who requires an editable text document format, or document adapted in content and form. Therefore, those are students with severe visual impairment, blind, or practically blind (https://centrumcarolina.cuni.cz/CC-24.html#2).

ASSESSMENT OF SPECIAL EDUCATIONAL NEEDS

A1 student, user of sight:

Educational programme in social and verbal communication

Space and duration of communication assessment, by agreement

Requirements for work with written text – time compensation

NED (non-editable electronic document) assessment, by agreement

Requirements for work with symbols and graphics

Time compensation, NED assessment, by agreement

Requirements for work with technology

Time compensation, occasional pedagogical intervention

Individual tuition assessment, by agreement

Personal needs related to disability

Occasional personal assistance

Spatial orientation assessment, by agreement

A2 user of touch/voice:

Educational programme in social and verbal communication/space and duration of communication

Requirements for work with written text – time compensation

EED (editable electronic document), 1st or 2nd class

TD (touch document), by agreement

Requirements for work with multimedia – compensation of video documents assessment, by agreement

Requirements for work with symbols and graphics – time compensation

EED, TD assessment

Requirements for work with technology

Time compensation

Study assistance

Occasional or transitional pedagogical intervention

Individual tuition assessment, by agreement

Personal needs related to disability – occasional, regular personal assistance

Spatial orientation assessment, by agreement

DATA COLLECTION

Tab. 1 NUMBER OF STUDENTS - DATA AS AT 31 OCTOBER 2020

	Visual impairment	Hearing impairment	Physical disability	Specific Learning Disabilities	Autism spectrum disorders	Other difficulties	Combined disability	TOTAL
	AND	B	C	D	E	F
KTF		1	3	4		3	1	12
ETF				2		3		5
HTF	2	2	2	10		14	10	40
PF	8	1	2	15	1	18	6	51
1LF				11		2	1	14
2LF	2			5		2		9
3LF	1	4		7		3		15
LFPl	2	2		7		6		17
LFHK		1		6		1		8
FaF	1		1	5	1	10	1	19
FF	11	18	9	43	9	83	21	194
PřF	2	4	1	16	14	21	4	62
MFF	1	2	1	38	9	23	6	80
PedF	7	10	3	40	5	23	10	98
FSV	3			10	2	18	6	39
FTVS		2	4	6		3	3	18
FHS	5			4	2	13	3	27
Total	45	47	26	229	43	246	72	708

Tab. 2 NUMBER OF STUDENTS - COMPARISON OF THE NUMBER OF STUDENTS IN 2012 AND 2013

	A	B	C	D	E	Overall
2012	23	26	18	27	45	139
2013	28	33	24	50	69	204
Increase	5	7	6	22	24	65
%	22%	27%	33%	81%	53%	47%

Innovations in learning and assistive technologies, as well as provisions in disabilities supports, were viewed as central factors contributing to the increase in enrolment and graduation rates from colleges for individuals with disabilities as well as with visual impairment (tab. 1, 2).

PANDEMIC EXPERIENCE

„… I have already mastered about 5 platforms, and everything has been successful. And this week I learned how to share a presentation via Zoom. The teacher was so kind that she allowed me to a try presenting via Zoom in advance and guided me where to click with computer mouse. When I said I didn't have a mouse, she said I should use a touchpad. [loud laugh] Well, fortunately, my computer literacy is reasonable, so I figured it out myself. I even made a big discovery that today's readers allow you to run a presentation and see it at the same time. So, perhaps for the first time in history, I presented as a sighted person (not counting previous use of the presentation in text form). Sure, I could have sent it, but I just wanted to see if it could learn how to do it. And it's even more pleasant because I'm in touch with what others see (it was quite some adrenaline when someone skipped slides instead of me). “

CONCLUSIONS

CU Rector’s Decree no. 9/2013 is a key internal regulation governing the conditions for the provision of support to CU students and applicants for study with special needs. The decree is divided into 10 basic articles, which contain provisions relating to basic support tools both before and during study, as well as information on the organisation of support services and the use of library, information, accommodation, and catering services. The decree came into effect on 1 July 2013.

Students are grateful for the support. They want to be like everyone else. Offer (all) students the opportunity to overcome challenges.

Lit.: Gurb, E. (2000). Maximizing the potential of young adults with visual impairments: The metacognitive element. Journal of Visual Impairment and Blindness,94(9),574–583.

Květoňová, L., Hájková, V., Strnadová I (2012). Cesty k inkluzi. Praha: Karolinum.

Myers, K. A., & Bastian, J. J. (2010). Understanding communication preferences of college students with visual disabilities. Journal of College Student Develop-ment,51(3), 265–278.

Centrum Carolina Charles University https://centrumcarolina.cuni.cz/CC-24.html#2

Special-Needs Students at Charles University in Prague https://cuni.cz/UKEN-191-version1-ipsc_80_version1_specialneeds.pdf

HalkaTytykalová, Raná starostlivosť

Our story

A fundamental change: families come with children who have other difficulties with their vision than before. Their number is growing.

Many of these children were born prematurely.

Parents come to us and often only know that the child does not see and that this state is related to the brain. They were told by a doctor that they need to stimulate the child's vision.

Many of these children behave like blind. We observe them staring at a light. Children are concerned about the busy environment... Parents say that their child visually responds to some stimuli, but not always.

We know from our experience that families with visually impaired children need support as soon as possible.

We feel the urgency of the situation, and, therefore, we have begun to look intensively for ways to help children with CVI and their parents. We see the solution in a thorough diagnosis of the child's visual behavior and targeted aftercare.

Who we are

At Raná starostlivosť, n.o., we specialize in early intervention in families with children with visual and multiple disabilities under the age of seven.

The early intervention service includes family-centered service. It contains social preventionactivities, counseling, social rehabilitation, comprehensive support for the child's development, and community rehabilitation.

We provide service mainly in the households of families.

Our internal team:

a specialist in counseling (social law), psychologists, special education teachers, and a Physical therapist.

We focus, e.g., at:

- supporting the family in gathering information about the child's diagnosis,

- support for parental competencies,

- providing information on the specifics of the child's observed reactions,

- supporting the family in identifying functional needs,

- helping the family to set up a stimulating environment for the child,

- supporting an active participation of the child in daily routines in the family.

Our challenges

1.Recognize as soon as possible the visual and behavioral characteristics of children with CVI.

2.Targeted intervention.

3.Find or create collaborative teams of experts - within internal and external collaborators.

4.Develop a partnership with the family and create the Individualized family plan (IFP).

5.Encourage the family to realize its goals and the child to stay active and at the same time develop its vision.

6.Create a support group for parents.

7.Share our experience with other child care providers with CVI.

Education

Perkins School for the Blind, The National Institute for the Blind, Visually Impaired and Deafblind, Iceland, EDA CZ, various resources (online, books ...)

Two specialists (psychologist and teacher for visually impaired children) trained the other members of the team. They also prepared the first educational workshops for parents and other care providers.

We obtained the major funding for education and verification of knowledge in practice from Vital Capacities - program ACF - Slovakia, (2019 - 2020). And also, from the financing of private donors combined with volunteering.

We currently work with approximately 25 families with children with CVI - some as part of an early intervention service, with others on an educational or a support group for parents.

We most often work with children in I. or II. phase CVI.

Often these are children with complex needs, movement, and communication issues.

Sometimes CVI coexists with ocular forms of visual impairment.

When planning an intervention with the family, we use the functional vision assessment The CVI Range (Roman-Lantzy, 2007; rev. 2018).

üIt allows the assessment of the youngest children, including children with multiple disabilities.

üIt emphasizes the importance of information from parents (from their observation of the child).

üTargeted intervention is part of daily routines to support the active participation of the child.

üThe information obtained from the CVI Range and the CVI Progress Chart can be directly applied to the development of goals.

üIt is easy to share results in teams (including families).

However, we also use other options, for example, using pediatric tests Lea symbols. We also get useful information from projects TEACHCVI, CVI Scotland, and so on.

Several members of the team have gained or are gaining experience in studying for visual therapists in the Czech Republic or in further professional education (Lea symbols - teacher Markéta Skalická).

Our young friends

Dominika

The goal of intervention is to integrate vision into functioning. We adjust the conditions to Dominika to succeed and respect that she cannot functionally use the vision continuously.

Our team: parents, a key worker and specialist in Video interactions guidance, special education teacher for visually impaired children, Physical Therapist, psychologist (Routine based interview - RBI), the teacher for visually impaired children in kindergarten (external worker).

Examples of recommendations for IFP:

Play/Floor Time

We will prepare a one-color carpet for Dominika. We place it by a one-color wall.

Dominika is actively discovering items using the Pegboard book (can be borrowed or made).

Meal Time

We use a one-color plate or placemat.

We smell the food before we touch it.

We will reduce the number of other stimuli.

Bed Time - Reading Book

First, we tell a part of the story (for example, about a propeller from an adapted book). Then we look at the photos (encourage Dominika verbally, give her enough time to process the visual perception). Then praise Dominika and talk about what she saw.

Limit sensory input at bedtime (no music, no toys).

What did Dominika's mother state:

"The findings from the functional vision assessment were especially useful for me. We found out what is difficult for Dominika and what environment does not allow her to use vision."

What did Miroslava say (key worker and a specialist in Video interactions guidance):

"I have seen in my family that when a parent or I try to attract a child, we often do not meet each other in this situation. CVI Range helped us in modifying the environment, objects, and toys that Dominika uses. Also, to understand better what helps Dominika - for example, movement, light or color preference. We linked this to interaction support through Video interactions guidance. The physiotherapist has found a way to make it easier for Dominika to move.

The combination of support via VTG and CVI Range and further support helps Dominika perceive the stimuli from the environment more and get involved in everyday events.”

Jakub

For Jakub, vision is the most important sense through which he explores the world. Other senses continue to play an important role compared to children without visual impairment. Jakub is visually curious in a familiar environment. The challenge is 2D images and the use of symbols. We support Jakub in comparative thought and getting to know new objects with the help of Salient Features.

Our team: parents, a key worker and specialist in Video interactions guidance (in training), special education teacher for visually impaired children, Physical Therapist, psychologist (Routine based interview - RBI), the teacher for visually impaired children in kindergarten, and special education teacher (external workers).

Examples from IFP

Play/Floor Time

Goal: Support of autonomous

Strategy: At least once during the day, we will integrate the Play/Floor Time according to Jakub's own choice.

Based on what they see and hear from Jakub, the parents describe and develop the play's theme so that Jakub can continue and develop it.

We adjust the environment - we store toys in one-color boxes, containers, we reduce the sounds from the surroundings.

Dressing

Goal: Jakub is more active in dressing

Strategy: Mom marks the place where briefs, socks, pajamas are stored - a combination of color mylar foil and photos of the type of clothes that are inside. In the morning, Jakub and his mother choose from the marked drawers on what to wear. Mom helps in case Jakub needs it.

Jakub helps to store the clothes in the drawers ("These are my socks, briefs/These are father's"). For Jakub to recognize the front and back of the T-shirt and pants, his mother marks the back of the clothes with a deep colored dot on a black background.

What did Jakub's mother observe:

"The functional vision assessment helped me to clarify my observations of how Jakub uses vision and, most importantly, how to help him. With our special education teacher, physiotherapist, speech therapist, and kindergarten teacher, we were able to modify some of the activities.

We realized the difficulty with the complexity - we started using simpler images on a monochrome background. We use a tablet - backlighting helps Jakub to use his vision. We recognize visual salient features. We are not doing well yet, we use little comparative language, but we are making progress.

We use a blackboard on the wall for difficulties with perception in the lower part of the visual field.

I better understand that Jakub's loss of concentration in a busy environment is not his decision. I try to be more understanding and patient."

What did Andrea notice (key worker and a specialist in Video interactions guidance in training):

"The most useful for me was understanding how to support the vision and learning of a child with CVI, which is in II. to III. phase. Also, that it is important to support the vision and build a visual vocabulary. And working with images through salient features, too. It was also helpful to realize how to work with images."

The most difficult challenges for parents

-Adapting the environment (not to be too complex).

-Positioning the child so that he/she can, for example, engage vision and reach a spoon while eating.

-Requiring the active involvement of the child.

-Providing sufficient time for the active involvement of the child.

-Respecting the difficulties of engaging the vision and at the same time hearing or touching.

-The need for a gradual transition from 3D to 2D.

-Confusion of Visual Fatigue with: "Not interested."

-Understanding the difficulties with new visual targets.

-Understanding the need for predictability and routine - use of Calendar systems to build context, memory, and expectation to support perception and understanding.

-Respecting the specifics of independent movement. The child moves at home with confidence, but on the street or in a busy environment, he/she stops using the vision.

The most difficult challenges for institutions (children's centers, kindergarten)

- Adjustment of the environment - the simplest change is the child's placement away from the primary light source.

- Preference for more accessible communication with the use of objects before using pictures - symbols.

- Use of "rest areas".

How did the parents reflect the changes?

- My son is more perceptive. He registers me when I come to him.

- My daughter is more engaged with coloring books. She doesn't look so hard in the window anymore.

- The son started watching the movement of the toy car on the tablet. He started catching some objects.

- The daughter no longer needs a lighted spoon to find it with her eyes.

- She grabs its hand even though the spoon is yellow (no light).

- The son is more attentive; he doesn't sleep so much during the day. He looks nicely at the stars on the app when he uses CVI Den. His father made this aid for him.

- The son in the Little room is watching his favorite ball. He catches the mylar foil with his hands.

- The daughter feels safer, and she is happier when we offer her an available visual stimulus during physiotherapy.

The son is happier when we offer him Light Aide or slinky with lighting during tummy time.

Thank you for your attention and the opportunity to present our first experience in targeted care for families with children with CVI.

Thanks to Zuzana Krchňavá, Director of Raná starostlivosť, and my colleagues for their help.

And also, thanks to Otka Čechová for her support and inspiration in my work.

I thank all our families for their trust and cooperation.

Our growing fb support group Deti, ktoré sa učia vidieť

Web Raná starostlivosť

Please send questions to tytykalova@ranastarostlivost.sk; I will be happy to answer them.

PHOTO - with the consent of Dominica's, Jakub´s and Marínka´s parents and with the consent Miroslava and Andrea.

Picture: from Jozef Mikulcik Pixabay, http://roman-word-bubbling.appspot.com/

References

Konkretizácia poskytovaných služieb včasnej intervencie podľa zákona o sociálnych službách, APPVI; 2019

ROMAN – LANTZY, CH. 2018. Cortical Visual Impairment: An Approach to Assessment and Intervention. New York, NY: AFB Press, 2018. 268 s. ISBN-13: 978-0891286882

LUECK, A. H., DUTTON, G. N. (edit.). 2015. Vision and the Brain: Understanding Cerebral Visual Impairment in Children. New York, NY: AFB Press, 2015. 720 s. ISBN-13: 978-0891286394

ROMAN – LANTZY, CH. 2018. Cortical Visual Impairment Advanced Principles. New York, NY: AFB Press, 2018. 268 s. ISBN-13: 978-0891286882

TALLENT, A. TALLENT, AND., BUSH, F. 2012. Little Bear Sees: How Children with Cortical Visual Impairment Can Learn to See. Burlingame, CA: Little Bear Sees Publishing, 2012. 156 s. ISBN-13: 978-1936214822

MORAVCOVÁ, D. 2004. Zraková terapie slabozrakých a pacientů s nízkym vizem, TRITON,2004. 203 s. ISBN 80-7254-476-4

SHELINE, D. 2016. Strategy to See: Strategies for Students with Cerebral/Cortical Visual Impairment. VeriNova LLC, 2016. 142 s. ISBN-13: 978-0996113120

ROMAN – LANTZY, CH. , TIETJEN M. 2020. Sensory Balance: An Approach to Learning Media Planning for Students with CVI. Perkins School for the Blind. Watertown, MA. 36 s. ISBN-13: 978-1947954007

RUSSELL, CH. 2019. Template for Functional Vision Assessment for Students with Cortical Visual Impairment (CVI), 2019

DIY Pegboard Book. https://strategytosee.com/; 2021

ANCHOR CENTER FOR BLIND CHILDREN. 2021. Idea For Routines

BENNETT R. G. 2021 CVI and Visual Fatigue; 2021

MCWILLIAM R. A. (Editor). 2010. Working with Families of Young Children with Special Needs (What Works for Special-Needs Learners). The Guildford Press. NY. 265 s. ISBN-13: 978-1606235393

http://roman-word-bubbling.appspot.com/, 2021

HildePA van der Aa^1,3, Marjolein LA Onnink¹, Lisanne BA Teunissen¹, Ruth MA van Nispen³, Peter FJ Verstraten¹

1. Robert Coppes Foundation, Vught, The Netherlands
2. Amsterdam UMC, Vrije Universiteit, Psychiatry and GGZinGeest, Amsterdam, The Netherlands
3. Amsterdam UMC, Vrije Universiteit, Ophthalmology and the Amsterdam Public Health research institute, Amsterdam, The Netherlands

Background: The impact of visual impairment (VI) and comorbid mental disorders (MDs) on people’s daily functioning has been barely investigated. Therefore, the aims of this study were to: 1) determine the impact of VI and comorbid MD on functioning in essential life domains, (2) gain insight into best-practices to support people with this combination of impairments, and (3) determine strategies to optimize care that is provided for them.

Methods: A qualitative Delphi method, based on four steps, was used to obtain input from Dutch professionals (e.g. psychiatrists, psychologists, social workers, group counsellors, n=31) who have extensive experience in working with this target group, i.e. experts. Based on the Self-Sufficiency Matrices they were asked to determine the impact of VI and MD on various aspects of daily functioning.

Results: Experts indicate that anxiety, depression, fatigue and sleep disturbances are often experienced in this target population. Also, many tend to neglect self-care and substance abuse is common. Because of communication restrictions (e.g. no facial recognition) and difficulty in trusting others, social interaction and relationships are complicated. Experts advise using evidence-based treatment options to support this target group and offer multidisciplinary care. They stress the importance of building a trustful relationship, showing patience and empathy, building on positive experiences and involving the informal network.

Conclusion: Experts describe a frail population, in which the VI and comorbid MD have a cumulative negative influence on people’s mental and physical health and provide insight into best-practices to support them. More research is needed to determine the best treatment options and clients’ perspectives should be included.

11 ORAL PRESENTATION

12 POSTER PRESENTATION

13 CONFERENCE CLOSING

Mariana Čapková, representative of the Prague´s government

Ladies and Gentlemen,

I am extremely honoured to be able to send you a few words at the end of this precious meeting. I am very sorry, I am not able to be personally present, but I was asked to help in a summer camp, organised for children, as a support to the part of Czech Republic affected by tornado in the last days. Big tragedy for the Morava region.

Let me thank all the speakers, organizers and audience on behalf of the Capital City of Prague, that, despite such an unfavourable year, has overcome considerable complications and met, online or personally. I am glad, that such an important topic as the support of children and adults with visual impairments and their families could be heard and that we were able to hear the experience of experts from many countries and fields. Despite the fact, that each country has a slightly different way of networking support, the main challenges and problems remain the same. Behind each post, we could hear the specific fates of people who have their lives associated with visual impairment, as well as the stories of those who help them. We could listen to testimonies of determination, expertise and will to keep finding new ways for a better life for each person. There has also been a great deal of very concrete experience. And sharing experiences, stimuli and mutual inspiration is the way to constantly develop quality of life. For me personally, this conference has been very inspiring indeed, and not only in the field of education that I am engaged in.

I am pleased that, despite the difficult situation, such a professional meeting could take place, full of mutual enrichment and new observations. For me, it is a symbol of hope that common paths and solutions can be found even in difficult times, as well as a symbol that, hopefully, difficult times are in decline and it will be possible to provide everyone with the support they need again.

Thank you for visiting our beautiful City and I hope you will find a reason to come back again. Sincerely.

14 HOMEPAGE

https://www.visionprague2020.cz

It was created in a simple and clear design, adapted for the visually impaired. Emphasis was placed on the contrast of background and text and the clarity of topics and links. It was supported by the Blind friendly function for the blind. A special email was created conference@visionprague2020.cz only for the needs of the conference and facilitated communication with participants.

The course of the conference was recorded and individual lectures were presented in a structured way on the conference website.

15 SUPPLEMENT – BACKSTAGE FOTO

Thanks to all those who helped and supported the implementation of

the online - Prague Vision 2021 conference.

By providing full-texts and presentations to the ICEVI Newsletter, the authors agree to the publication and publication of photographs.