JULIA MAYOROVA

Julia is the Director of the Deafblind Support Resource Center in Moscow, that provides services for children and adults with multiple disabilities and educational courses for specialists, who work with deafblind people. Julia has extensive experience in organizing international scientific conferences and specializes in working with young researchers. She created and led the project "Mentors and students'', which aims to develop a scientific school for the study of deafblindness in Russia and the formation of a sustainable scientific community. She started a new format of the International Young Researchers Conference on deafblindness, with the main aim of this event to give the opportunity to young scientists within the field of deafblindness to share experiences and to create an international network.

ALINA KHOKHLOVA

Alina is Assistant Professor in Moscow State University of Psychology and Education and a psychologist in Deafblind Support Resource Center. For the past 15 years, she has worked as a psychologist in the School for the Deaf, Home Department for children with multiple disabilities. She has more than 25 publications in Russian, with the main topics: cognitive development of the Deaf, sign language and communication, communication in families with deaf and deafblind children.

In connection with the Covid-19 pandemic in April 2020, educational organizations, including the Yaseneva Polyana Resource Center of support deafblind and their families (Moscow), have moved to digital work. And if we are talking about working with specialists, we were ready for this kind of approach: we have been providing online educational courses, consultations and webinars on an ongoing basis for a pretty long time. What was difficult in this situation is to continue group and individual work with children with deafblindness and MD in online format. Both specialists and parents doubted the possibility and effectiveness of this format. Nevertheless, it seemed very important for us to stay in touch and provide at least some support to children and parents. Summing up our experience, we can highlight some conditions and general recommendations, which in special situations when face-to-face meetings with are impossible, can be relatively successfully implemented.

It was sometimes possible to hold classes with teenagers and young adults online using sign language, chatting, and illustrative materials.

The organization of classes with children of early age with severe multiple developmental disorders seemed to be the most difficult. But together with parents we decided to organize several sessions with each child, as well as group sessions in an experimental format.

If we briefly describe the features of a specialist's work with little children with severe and multiple disabilities in a face-to-face format, it is necessary to take into account slow or delayed reactions to many types of stimuli, specific communicative actions, and the special importance of close tactile contact. Teachers often choose individually for each child the most effective stimuli: objects of a certain color, texture, even weight and temperature, sounds with certain characteristics, intensity and nature of touch (which on the one hand is positively perceived by the child, and on the other is necessary and sufficient to activate movement and communication). For each child, the average reaction time to certain types of stimuli is determined experimentally. This is necessary to understand the pace of the activity. The objectives of such work are: support for communicative initiative, cognitive interest, intentional movements, and learning about the characteristics of objects.

In the situation of online lessons, parents become guides. It is important to understand that explaining technology to parents before they start practice is not always effective. Therefore, we advice to guide the behavior of a parent as a communication and game partner just during the class. And the tools of this regulation are, first of all, very clear instructions. Secondly, the pace of our speech and intonation can also set a certain rhythm and pace to the movements and behavior of the parent. Thirdly, we help the parent to notice and interpret the child's actions.

The presentation will show the results of this work and the conclusions we made after interviewing parents.

Cristian Buică Belciu, Ph.D., Associate Professor of Special Education is the Chair of the Department of Special Psycho-pedagogy (Special Education) within the Faculty of Psychology and Educational Sciences, University of Bucharest, Romania and a member on the Board of Directors of the Romanian Psychologists College.

Also, he is a member of Deafblind International.His professional activities include the participation in national and international programmes, post-graduate training courses - including the areas of deafblindness and multisensory impairments, attending national and international symposiums, conferences and workshops. He is author and co-author of many scientific papers (books, chapters in collective volumes, scientific articles, communications).

Communication represents both the instrument, and the essential environment for the social inclusion of people with deafblindness. Through communication, not only information is circulated, but also opinions, convictions, emotional states, attitudes, values. In the case of deafblindness above all, communication - in all its forms - has the role of a binding agent for interpersonal relations, contributing to the individual’s immersion in a dynamics of exterior will and intentionality, sometimes permissive, other times reluctant towards one’s own will and intention, evaluative, but also formative in the sphere of knowledge experiences. It provides a continuous flow of learning, accessed directly through touch, residual hearing or vision, or mediated via an interpreter /facilitator or via assistive technology.

Beyond information, training or knowledge, communication also imposes a transfer of authority and power, both collectively (from a group to an individual), and individually (from the leader of the group to the individual). The relationship between the person with deafblindness and the group, taken as a whole and turned into a leader, is completely unbalanced and unavoidably unequivocal, in the disadvantage of the first one. In this situation, the communication in the community works more as an instrument of acculturation than one of education, a phenomenon where the person with deafblindness is given and instilled with representations, convictions, values and attitudes of his/her group. Thus, the social inclusion of people with deafblindness takes features specific to ableism, becoming almost similar to cultural colonialism sui generis.

More profound than in the case of any other type of disability, in deafblindness, symptoms such as audism, vidism, or more recently distantism, become more acute, allowing the impression of an apparent inclusion, but leaving the mark of a segregative inequality, often inflexible and intolerant, camouflaged in the discourse of the militant good. Moving from communication to community and from community to communication represents nothing else but this symbolic tokenism of the self-sufficient and self-satisfying for of ableist imperialism and the real opening towards „communication”, towards “putting together” information, ideas, feelings, experiences  and values of all members of the respective group.

This way, by cultivating a truly inclusive ethos, people with deafblindness will be able to redefine their group, over time, as a reference group with all profound and pervasive effects upon the self, the identity auto-definition, self estimation and affirmation, moral values introversion and authentic civic participation to community and society.

Mr. Denis Kuleshov is Head of Laboratory "Sensor-Tech" which develops innovative technologies and devices for people with sensory impairments. He started his professional career in the sphere of technological rehabilitation and assistive technology at the Center for Complex Rehabilitation of the Deaf and Hard-of-Hearing, BMSTU. Then, Denis co-established "The center for development of social innovation "Enabling Technologies" where he oversees research and education projects. Author of 14 research papers and 8 patents. For his active participation and implementation of socially significant projects, Denis Kuleshov has been awarded commendation by the Russian President and the Mayor of Moscow.

Visual and hearing disabilities are acute problems affecting many people worldwide. Laboratory «Sensor-Tech» has been established to address these problems and develop technologies and devices for people with visual and hearing disabilities, including the deaf-blind. In this report, Mr. Denis Kuleshov, Director of «Laboratory Sensor-Tech», will present the technologies and products developed for people with visual and hearing limitations, including Smart assistant for the blind «Robin», Speech recognition device «Charly» and Ophthalmic VR-Simulator «See My World». Developed for people with sensory limitations, these products aim to make the lives of people with disabilities better.

Smart assistant for the blind «Robin» is a new assistive device which allows blind people to better orientate themselves indoors and outdoors. «Robin» can recognize objects – up to 50 units, determine distance to them and detect obstacles. Recognition results are transmitted to the user through plug-in headphones.  To warn a user about unexpected obstacles, Smart assistant «Robin» transmits the information about them by vibrations of different intensity. «Robin» looks like a small camera and can be easily worn on a hand. It works without Internet connection or third-party applications. «Robin» has been developed as a complement to a white cane. Thus, it is simple to use and does not require long training.

Speech recognition device «Charly» is designed for independent communication between people with hearing impairments, deaf-blind and people without health limitations. «Charly» allows to recognize speech and converts it into text. «Charly» displays recognized speech on a monitor, a mobile phone, a TV, a tablet or a Braille display. «Charly» can be used in social service centers, educational institutions, hospitals and clinics, banks, railway stations, etc. In perspective, «Charly» will also allow to study or work remotely: for instance, at university, for remote work, at conferences, etc.

Ophthalmic VR-Simulator «See My World» on the basis of real clinical data allows to imitate various eye diseases and also bionic vision (imitation of eye prostheses). The technology allows to study specificities of eye diseases from previously inaccessible side – from the side of a patient. The Simulator can be used for educational and medical purposes, for example, to evaluate capabilities of pupils studying at special schools, to adapt education materials for children with visual impairments, etc. «See My World» can also be used in eye clinics – it allows to show the relatives how their close one with visual impairments sees. «See My World» can be used for scientific purposes for a deeper studying of various eye diseases as well. The Simulator has been developed in 2 versions: for PC («See My World VR») and for mobile devices («See My World») and professional version («See My World Pro» for «iOS»). Mobile app is available for free download.

Dan is the founder of the Association for Urban Development. He was born in Bucharest in 1978. He graduated from Jean Monnet Highschool in Bucharest and the Faculty of Film within the National University of Theater and Film, specialising in Film and TV Cinematography (2000-2004). He worked as Cameraman and Photography Director (Pro TV, Antena 1, Castel Film, Media Pro). He established the Association for Urban Development in 2007, and since 2010 he has been implementing lobby and advocacy projects dedicated to people with visual impairments. In 2020, he launched the e-learning platform Tactile Images, giving children with visual impairment everywhere the chance to discover the world independently, with the help of assistive technology.

The development of spatial intelligence is vital for children with visual impairments because it helps them create coherent mental images of the surrounding world, as well as to move around the environment. The same goes for children with deafblindness and multisensory impairments as well, where residual vision and hearing allow.

Spatial education is a 1:1 type of education, it requires direct interaction between the child with visual impairments and the teacher guiding his/her hands on an embossed drawing while explaining what the fingers sense. How can we keep teaching though, during the COVID-19 pandemic, with the schools closed?

With the help of the e-learning platform Tactile Images, teachers have access to a library of 800 self-describing drawings. At the same time, it allows them to create more drawings with personalised descriptions, with a QR code attached, and then send these to the parents of children with visual impairments by e-mail.

The embossed printing can be done by parents, who become important actors in the educational process, through a simple and cheap method: the Syringe with Adhesive. After the drawing was embossed, the child can explore it independently with the help of an assistant app that reads the QR code, identifies the drawing and then the position of the pointing finger on the drawing, reading the description introduced in the platform by the teacher.

As every educational process must end with an assessment, we go back to the online platform. There, teachers can create groups for each class where they teach in order to track children’s progress alongside the parents.

The e-learning platform Tactile IMages is the missing link between spatial education and long distance teaching because it aims to break the barriers imposed by the traditional ways of teaching. It aims to do this by transferring the knowledge of the teacher online, and each child can have access to personalised information from home.

UTTAM KUMAR

Mr Uttam Kumar, Director – Programme Sense India, is in the disability sector for 20 years and associated with deafblindness and Sense India for 16 years. He is trained in Disability Rehabilitation Services and Masters in Psychology. He has expertise and skills in conceptualising, planning and implementing training of special educators, families and also developing resource materials as well. He has trained professionals in India, Bangladesh, Nepal and Uganda on the varying level of deafblindness and disabilities. He has also contributed to various publications and published papers in journals.

SACHIN RIZAL

Mr Sachin Rizal has been working with Sense India since 2006. He was India’s first official deafblind interpreter, and developed skills to support and guide persons with deafblindness and their families. As Head of Capacity Building at Sense India he works closely with partner organisations in India, Bangladesh and Nepal. He trains children and adults with deafblindness, their family members, educators, professionals, medical and paramedical professionals on a national and an international level. He has also trained Sarva Shiksha Abhiyan (SSA) master trainers to work with deafblind children and develops learning materials depending on the needs. Sachin has also skills to develop curriculum for training of professionals at various levels, and develop reading and reference materials.

In the recent years, use of technology has increased in the rehabilitation programme for persons with disabilities. In some sectors, the use of technology was anyway at the advanced level, whereas, in the field of deafblindness, the use of technology was limited due to various limitations like affordability, availability, skill to use, innovation, etc.  During the recent COVID-19 pandemic, we were forced to look at the options to use technology to support the needs of persons with deafblindness; this included the areas related to programme management and assistive technology.

Assistive Technology (AT) is the primary means of supporting communication of people with deafblindness (PwDb) and disabilities (PwD). It is to OVERCOME the limiting effect of their disability and enable them to perform TASKS in any given CIRCUMSTANCES and ENVIRONMENT. It helps them become efficient to an extent possible and creates a level playing field with the sighted- hearing world. AT also helps a person with deafblindness to communicate independently without human support.

Assistive technology also enables persons with deafblindness to receive reading and writing material according to their needs (in Braille/ Morse code or in Large Print); and provides exposure to the Internet – hub of database which brings the world to their fingertips.

Assistive technology makes a person with deafblindness more independent and supports them in their communication as well. However, there is no one particular device which is universal and works for all people with deafblindness and requires customization as per the needs of an individual user.

It refers to products, devices or equipment that are used to maintain, increase or improve the functional capabilities of people with deafblindness. Assistive technology can help to compensate for functional limitations and enable people to participate in the activities of day to day life, including education, training, socialisation, independence and employment.

The UNCRPD under Article 2 says: “Communication” includes languages, display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communicationtechnology.

India, Bangladesh and Nepal share similar geographical topography and culture as well. Therefore, most of the techniques which are applicable or implemented in one country may be replicated in other two countries as well. COVID-19 pandemic brought lots of challenges in the lives of persons with deafblindness, their caregivers and professionals. Initially when the lockdown happened, we were not in the position of understanding or coping with the situations. It was very difficult to get in touch with individuals with deafblindness. There was an absolute opacity formed because of the communication barriers between the educators and persons with deafblindness.

At one point of time there was even frustration seen among parents as they were helpless in coping up with the situation of their child/ children. The only hope of having a contact with them was through their caregivers with the help of available technology i.e., through mobile phones using internet facilities, some using refreshable braille device, Samsung Good Vibes app, conventional calls, lend a phone option, video recordings and then disseminating it to parents for therapy or educational purpose, using conventional messages like SMS, using google drives to load the data, using digital communication and learning materials, changed to online transferring system and adaptations in teaching strategies.

The presentation will discuss the scope of technology in education and rehabilitation of persons with deafblindness and how Sense India used it to reach out to persons with deafblindness during COVID-19 pandemic.

OLIVIA VEREHA

Having a background in communication and User Experience Design, Olivia has been dedicating her time since 2016, to coordinating the programmes of Code for Romania. Passionate about technology and the way in which the digital can shape and improve the everyday life of people, Olivia’s objective is to understand in depth human behaviour in its interaction with the online environment. With a strong focus on functionality, efficiency and simplification, her greatest challenge is to translate from complicated to simple, from big to small, from chaos to meaning, everything linked with building digital solutions that aim at solving problems that we are all facing.

ETELKA CZONDI

Etelka joined the SIR team in 2007, as Programmes and Communication Coordinator. Beginning with April 1st 2017, she took on the position of Director. With an NGO experience of more than 20 years in Romania, Etelka has worked along the years with the European Children’s Trust and the Romanian Prader Willi Associations. She is licensed in Communication and Public Relations and in Psychology and is currently enrolled in a Master Degree Course at the University Bucharest, Faculty of Philosophy, studying International Development and Ethics of International Relations.

Digital technology is more and more widely spread in the education system and in our everyday life, but not in the case of children with deafblindness. In order for them to also have access to high quality education and not be “left behind”, a software that is adapted to the specific requirements given by the combination of hearing and visual impairments is needed.

In the absence of vision and/or hearing, access to knowledge is a lot more limited, which is why specific sensory stimulation activities are necessary, helping the child to be inContact with the world. The main purpose of e-Sense is to transpose in the digital technology sphere exercises that lead to the development of perception skills to detect sensory stimuli and to become aware of their presence, to develop the child’s attention to sensory stimuli, form and develop skills to localise these stimuli, to explore and manipulate them, to recognise and discriminate them.

The exercises on the platform are based on the professional expertise of the specialists in the field of deafblindness from the partner schools: School Centre for Inclusive Education Cristal Oradea, School Centre for Inclusive Education Constantin Pufan Timisoara and Special Technological Highschool Vasile Pavelcu Iasi, combined with the experience of the community of young an enthusiastic specialists from Code for Romania who develop IT solutions aiming at finding solutions to various issues related to people and society. Thus, a set of exercises was developed with the aim to provide the sensory stimulation of the child with deafblindness and multisensory impairments, a number of exercises for stimulation, localisation and identification.

After registering on the platform www.esense.ro, the specialist will have access to a series of exercises that can be done together with the child. The specialist has a high degree of control upon the exercises characteristics, such as shapes, colours, contrast, size, direction of movement – all in order to be able to personalise the exercises depending on the child’s level of development. The specialist will have the possibility to record, monitor and assess the child’s progress, therefore supporting the initial and continuous assessment process.

The exercises are developed in agreement with the National Curriculum for the Education of Children with Deafblindness/Multisensory Impairments (Order of the Ministry of Education, Research and Innovation no. 5243/01.09.2008) and the Educational Content for Ante-preschool Early Intervention for Children with Multisensory Impairments / Deafblindness (Order of the Ministry of Education no. 3071/18.01.2013).

The project is funded by Orange Foundation through the Programme The World through Colour and Sound, 2019 edition.