Poster presentations - group D

PRESENTATION TIMES

Wednesday, July 26, 2023

  • 12:45 PM - 1:30 PM
  • 4:45 PM - 5:30 PM

Thursday, July 27, 2023

  • 2:15 PM - 2:45 PM
POSTER: 1D - 3D Printed Objects for Calendar Concepts: Beneficial for People With CDB?
Wanda Frederiks
Netherlands
Introducing a 3D printed set of objects referring to the days of the week for communicative purposes developed at Bartiméus. We are presenting the first experiences of using the 3D objects. Concrete objects are successfully used in the communication with people with CDB. However, objects representing the days of the week are missing. This project was carried out in response to this issue. We developed and tested a set of 3D printed objects representing the days of the weeks. Abstract shapes are used to prevent any association with existing concrete objects. The use of color is added for people who are visually impaired. Markings and contrast are used to indicate the number of the day. Time is abstract for people with CDB. These 3D printed sets offer a tactile way of communicating and are especially beneficial for those who are fully blind and/or have difficulty signing. We follow the implementation of the 3D printed sets and collect data through video analysis, questionnaires, and interviews to fine tune the implementation. In this poster presentation, we will show the 3D printed objects and present the first results of using them. Having objects representing time will create the possibility to refer to the past and the future. People with CDB can expand their communication skills which will positively impact their overall development.
Lived-Experience Knowledge Sharing
POSTER: 2D - State of the Art About Volumes on Deafblindness for Oxford University Press
Marleen Janssen
Netherlands
Presentation and discussion on state of the art in three volumes for the Oxford University Press. The first Volume is entitled "Communication with People who are Deafblind: Assessment and Communication, and the second Volume is "Learning, Education and support of Deafblind children and Adults, an Interdisciplinary Lifespan Approach". The third volume, led by Deafblind Authors is still in progress. The volumes are focused on participation, education, and rehabilitation of people who are Deafblind. Educators (parents and professionals) and people who are deafblind, coming from three target groups (congenital, acquired, and age-related deafblindness) will be actively involved and informed about important research-based implications for clinical educational practice. Missing is a clear overview of the latest interdisciplinary research to bridge the gap between theory and practice to support the knowledge base of educators (teachers, support workers, parents, educational psychologists, therapists, rehabilitation workers and other professionals) and organizations in their mission to support lifelong learning and participation of people with deafblindness. Learning in this context is viewed from an educational perspective as the result of the interaction between personal characteristics of the individual with deafblindness and environmental factors such as social partners, interventions, methods and approaches, school or work changes, and other environmental opportunities (WHO, ICF, 2001). In these volumes, many authors across the globe are committed, and the importance of interdisciplinary research is emphasized with clear implications for effective practices, focused on the diversity of people who are deafblind within the diversity of educational environments or contexts. The editors will present the content and the state of the art of the three Volumes for Oxford University Press and give an overview of the definitive contributions. For each Volume, the main research-based implications for participation, education, and rehabilitation will be shared briefly. With the participants, it will be discussed how we will go on in finalizing the Volumes and sharing the knowledge from these Volumes. Ideas for a future International Symposium with all authors will be discussed, as well as for whom these books are valuable and how we can spread the existing knowledge across organizations, universities, and more important, professionals responsible for the supervision of educators across the three target groups. Please note the following: Latest research and research-based implications for education and rehabilitation in which the voices of Deafblind People are integrated and one volume is led by Deafblind authors. Authors who are deafblind are actively involved.
Latest Research
POSTER: 3D - My Tactile Way: Revealing Tactile Potentials to Create New Possibilities-A Case Study
Lisa Monen & Esther Keller
Netherlands
To present and discuss a case study in which we used available instruments in the field of tactile functioning, to find out to what extent these instruments complement each other. In this case study we tried to capture the tactile possibilities for learning and development of a young man with deafblindness.How can we really support development within the tactile world? The tactile sense includes multiple types of sensation received from the surface or inside the body (Nicholas, Johannessen, van Nunen, 2019). For persons with deafblindness the bodily-tactile sense is the most important modality for getting in touch with the surrounding world: to explore, to communicate, to learn. The Tactile Working Memory Scale (TWMS) is a scale for assessing working memory in the bodily-tactile modality. The Tactual Profile MDVI assesses tactual functioning of persons with multiple disabilities. Although these instruments are both observation scales, they provide us with different information. On the other hand both scales emphasize the competencies and potentials of persons with deafblindness.In our daily practice as communication professionals we wonder to what extent information from both instruments can complement each other in order to elicit, support and enhance the learning potentials of a person with deafblindness. With this idea we got in touch with Mark, a young man, 24 years old. He is totally blind and has hearing loss. What can we learn about his personal abilities to use touch to explore, to learn and to contact others? Together with the mother of Mark and his other communication partners we started this search. This search and the outcomes we would like to share and discuss.For persons with deafblindness the bodily-tactile sense is the most important modality for getting in touch with the surrounding world. Good assessment can contribute to our understanding and ways to support.
Services & Resources
POSTER: 4D - The Deaf-Blind Association of Toronto
Amanda Armour & Nadine Anderson
Canada

To share the history of DBAT in hopes to spread awareness and motivate DeafBlind communities around the world to come together and create their own associations. In 1961 a DeafBlind woman name Mae Brown started the Hand Highway Club with the support of the Women's Auxiliary Club and volunteers. This ran for 20 years, with dances, social events and parties. In 1981 the Hand Highway Club held a conference at Lake Joseph to promote the DeafBlind taking control of the group. In 1982 The Deaf-Blind Association of Toronto was formed with an executive board consisting of 3 DeafBlind members and 3 hearing-sighted. DBAT has since become a registered charity, taking the responsibility of fundraising, and hosting their own meetings.DBAT exists to advance the social and educational opportunities of DeafBlind people. Working together to research various activities as well as training experiences. Programs, trips and presentations are offered that are stimulating for DeafBlind persons and encourages them to be curious and interactive. Meetings provide a unique opportunity for DeafBlind persons to exchange experiences with each other and gain new knowledge of current events, available aids, and services. We have collected testimony from our members, wanting to share the positive impact DBAT has had on their lives.DBAT recognizes that the opportunities available to their members may not be available to those in other communities. By presenting the importance of a charity organization for DeafBlind by Deafblind, we hope to other DeafBlind people from around the world to come together and create their own group. The members of DBAT hope to connect with other DeafBlind communities from around the world and share their successes.

Lived-Experience Knowledge Sharing
POSTER: 5D - Postsecondary Preparation Experiences of College Students with Usher Syndrome
Tara Brown-Ogilvie
United States

The purpose of this qualitative study was to investigate the lived experiences of ten college students with Usher syndrome, to better understand the transition services and supports that prepared them for postsecondary education in the United States. A purposeful sample of ten college students with Usher syndrome engaged in interviews and focus groups in their preferred language modality. Participants had the choice of communicating directly with the researcher in English, American Sign Language (ASL), or Pidgin Signed English (PSE). Sign language interpreters were also available for Tactual American Sign Language (TASL) users. Additional descriptive data was collected through participant reflections and researcher notes. Credibility and trustworthiness were addressed throughout the study by qualitative means of triangulation, bridling, member checking, and peer review. Data analysis included thematic analysis using hand-coding and specialized software (i.e., NVivo 12 Pro) to showcase participant commonalities through emergent themes and salient quotes. Preliminary findings will be shared and implications for application discussed. These exploratory results aim to inform future evidence-based research, provide insights for parents, educators, and professionals, and work towards improving transition services and postsecondary preparation for students with Usher syndrome in the United States. 

Lived-Experience Knowledge Sharing
POSTER: 6D - Educational Practices Facilitating Learning for Children with Deafblindness and Multiple Disabilities in Latin America Spanish-speaking Caribbean Countries (LA&C), Universidad Católica de Córdoba
Graciela Ferioli & Zoe Karayannis
Argentina

To present relevant research for the deafblind field data presented by the World Federation of Deafblind shows that children with deafblindness are less likely to have been enrolled in schools than children with other disabilities. It also points to a lack of systems for analysis of the quality of educational plans and teaching practices. Without these systems, improving the quality of education is challenging. The purpose of this study carried out by Universidad Católica de Córdoba was to identify the practices that facilitate access to learning for children who are deafblind and with multiple disabilities in LAC and to identify a process of documentation that captures the quality of these practices. The study uses a qualitative approach. 16 videos that show educational practices with children with DB and with MD between 6 and 12 years old, in formal and non-formal settings, were invited from programs across LAC that had at least 20 years of service.  Qualitative analysis of videos was conducted based on the Buchanan protocol (2015) that focuses on activities and strategies used to achieve learning. Three researchers graded the videos using this protocol. Another team independently graded the videos. There was good agreement between the teams. Interviews and focus groups were conducted to gather deeper information. The application of Buchanan's indicators is a valuable approach in LAC. New topics, not covered in the indicators, emerged in the research.

Services & Resources
POSTER: 7D - Lived Experience of Deafblindness in Australia
Eliza McEwin
Australia
To share creative ways of addressing unfulfilled needs in service provision and education. My lived experience of deafblindness has been filled with unfulfilled needs in service provision and education. I have Usher Syndrome Type 2A. My diagnosis came 10 days before my 16th birthday and a few weeks before my final year of high school began. I went to 5 schools from ages 5 to 17. My higher education spans 6 academic programs across 3 Australian institutions. I have encountered responses from academics that are ignorant (being told I wouldn't be welcome in a program despite my grades), and, imitable (being asked what might facilitate access to a program's content). My professional experience across several sectors is diverse: from the lazy manager unable to discuss reasonable adjustments to facilitate my equal participation in the workplace, to valued colleagues proactively working with me to optimise my work performance. In my personal life, my experience is that the key to effective service provision and education is to persevere in the face of diverse responses, which includes people saying that I do not look deafblind, and the pandemic of smartphone blindness (when people walk into me as if I am a streetlamp while glued to their smartphone screen) and are quick to blame me until I tap my long white cane, noting that it is not a fashion accessory. I will share some coping strategies, including managing a BDBD (bad deafblind day). I have found that creating ways to address unfulfilled needs is the most important strategy to take my future into my own hands.
Lived-Experience Knowledge Sharing
POSTER: 8D - Innovations to Training: How Sensity Has Opened Up A World of Learning
Susan Hall
Canada
Sensity has developed some innovative approaches to providing training to a variety of audiences. The goal of this presentation is to share how we approach training our staff, families of individuals who are deafblind, other organizations, and the community at large. The content of the presentation will include the following: an outline of the training that is provided to all Sensity staff, both as part of their on-boarding experience and as part of their on-going development, a discussion and demonstration of the on-line professional development courses that Sensity offers to any interested party, the recent development of training that is specifically geared to families and how it is delivered, and examples of Sensity's consultation and training conducted with other organizations. Through the use of technology, Sensity is able to open up training opportunities to people from around the world. This would apply to people working as intervenors, as well as family members of individuals who are deafblind. In addition, the way Sensity has developed our training to meet the needs of different audiences, and the use of technology, could become a model for other service providers. In the development of our on-line courses, Sensity has solicited input from individuals we support. We will highlight these particular sections in the presentation, demonstrating what individuals who are deafblind are able to accomplish.
Services & Resources
POSTER: 9D - DeafBlind Ontario Services Partnerships - Mentoring and Training
Theresa Merrifield & Natasha Langley
Canada
DeafBlind Ontario Services collaborates with supporting developmental services agencies across the province of Ontario, Canada, creating Partnerships. These Partnerships offer specialized expertise and services to individuals with deafblindness. In our poster presentation we will share the purpose and process of our partnerships. With the guidance of our Community Services Team, every partnership is uniquely designed to ensure the needs of each individual are met. This includes specialized training for staff and ongoing mentorship and coaching focusing on the communication and sensory loss needs of the individual supported. Mentorship is the cornerstone of Partnerships utilizing our SHARE & Grow program. Those attending can learn about the process and tools we use to coach and mentor staff supporting people with combined vision and hearing loss.
Services & Resources
POSTER: 10D - How to Improve Healthcare for Individuals with Deafblindness?
Atul Jaiswal
Canada
Around 1.1 million older Canadians are living with deafblindness. The COVID-19 pandemic escalated the existing service delivery challenges when combined with communication and assessment difficulties experienced by healthcare professionals providing care to individuals with deafblindness. To overcome the challenges of delivering healthcare services to individuals with deafblindness, various strategies were employed by the healthcare professionals which were explored in this study.A cross-sectional was conducted with 228 healthcare providers in Canada. The data were collected through an online survey followed by in-depth qualitative interviews with 24 healthcare professionals. Interviews were audio-recorded using Zoom and transcribed verbatim. Quantitative data were analyzed using SPSS and qualitative data using content analysis.Healthcare professionals reported that the COVID-19 pandemic introduced novel challenges such as assessment and identification of disability while using personal protective equipment. Respondents working with individuals with deafblindness for over a decade identified strategies, such as using accessible formats, assistive devices, and healthcare accompaniment, that were helpful in identifying the sensory disability and communicating effectively with individuals. Additionally, repetition of the information ensured comprehension of health-related information. The findings highlight constructive strategies implemented by healthcare professionals in supporting the healthcare needs of individuals with deafblindness. To ensure adequate healthcare service delivery healthcare professionals stressed the importance of continuing education/ training on deafblindness as well as compliance, communication, and collaboration with other healthcare providers such as doctors, nurses, intervenors, and other clinicians.
Lived-Experience Knowledge Sharing
POSTER: 11D - Advocacy in a DeafBlind World (ADBW)
Laurie McBride & Kacie Weldy
United States

The Advocacy in a DeafBlind World will introduce the benefits and importance of the Peer Learning Group (PLG) utilizing a peer-to-peer learning and support system setting to foster knowledge and education to the DeafBlind individual. These individuals will learn how to develop and enhance one's ability and confidence to advocate for equal access to communication, community resources, transportation, print/media and technology application. The curriculum seeks to provide a means by which DeafBlind people can share ideas and solutions to assist peers and colleagues in achieving access to their worlds, which will ultimately lead to Self-Efficacy, Self-Advocacy, and Self-Preservation. Strategies emphasized throughout this curriculum include: Knowing what your needs are.  Knowing what support and accommodations are available.  Knowing the laws that protect you and their limitations.  Knowing how to get what you need when supported by law. Knowing how to get what you need when the law does not protect you.  Knowing how to educate other people about your needs and how to provide them when necessary.  Knowing when to persist and when to compromise.  Knowing how to manage your accommodations.  All instructors teaching this course are to be DeafBlind individuals, creating creditability and rapport for sharing information and strategies also based on personal experiences.  In conclusion, Advocacy in a DeafBlind World, provides mentorship directly to DeafBlind individuals who will acquire skills to advocate for equal access to communication, community resources, transportation, print/media and technology application. These skills will transfer to all aspects of life including Emergency Preparedness. Thus, enabling them to be as self-reliant as possible, prepared with tools, and attaining Self-Efficacy, Self-Advocacy, & Self-Preservation. To instill and educate the audience of self-efficacy, self-advocacy, and self-preservation of a person's ability to meet the challenges of emergency and disaster situations, to save themselves and family members.

Lived-Experience Knowledge Sharing
POSTER: 12D - COVID Realities and Health Care Needs and Supports for Deafblind Canadians
Dr. Mahadeo Sukhai
Canada
We explored the unique features and impacts of the COVID-19 pandemic within the Deafblind community in Canada.As in-person interpreting services in Canada were suspended at the height of the pandemic, the health and wellbeing, access to community resources and services, as well as social relationships for Deafblind persons required new forms and strategies to address individuals needs and supports across the waves of COVID pandemic. These services and strategies varied across communities, muncipalties and provinces in Canada due to the local nature of community outbreaks and defintions of essential service workers.Data collection was carried out using accessible online surveys and focus groups with the Deafblind community.Health care inequities were experienced during successive waves of COVID-19, shaped by intersectional identities and demographics. Specifically, Deafblind persons experienced decreased access to healthcare services, increased anxiety about accessing services without a caregiver or support person, decreased access to transportation and social services, and increased social isolation during COVID-19 lockdown periods. Some of these patterns reverted during periods where COVID-19 restrictions were lifted, while other trends were impacted long-term over the course of the pandemic.
Latest Research
POSTER: 13D - A Study on the Effects of Learning and Education on School-aged Deafblind Children on their Life After School
Hiroyuki Sugai
Japan
Clarify how the education received at school affects life after school. To enable teachers in charge of deafblind children to have a long-term perspective on the child's life after school. We got the grant from the Ministry of Education and conducted the survey on; A study on the effects of learning and education on school-aged deafblind children on their life after school. In this research, we conducted the survey of deafblind people who graduated from school. This research was conducted so that teachers in charge of deafblind children at special schools could have a long-term perspective on the life of the deafblind children after school. There were three types of surveys: questionnaire surveys, interview surveys, and literature collection. (1) The questionnaire survey by mail. We got the data of 76 deafblind children. The contents are the age and course of onset of disability, the content of education and their evaluation, current living conditions, how to interact with others, dissatisfaction with living, hopes for the future, etc.  (2) The interview survey. We conducted a detailed a semi-structured interview with 15 deafblind people themselves or with their parents. We got the data of the concrete contents of the educational practice and the educational contents that are thought to be very useful for the current life and activities, etc.  (3) literature collection.  We collected 426 documents on the practice records of education and life records of deafblind children in Japan and created a detailed list.
Lived-Experience Knowledge Sharing
POSTER: 14D - Deafblindness: A Broad Overview of the Legal and Social Framework in Germany and Snapshot of Deutsches Taubblindwerk Services to Assist Participation and Inclusion
Vikram Choudhary & Bettina Trissia
Germany
To present a broad overview of the legal and social situation of Deafblindness in Germany. It shows how a deafblind institute in North Germany is navigating through a snapshot of its services and offers.On January 2017, through political engagement, the Deutsches Taubblindwerk along with other partners was able to get the Federal Ministry of Labour and Social Affairs to recognise Deafblindness as a distinct and unique disability. This was necessary to introduce specific benefit, e.g. an entitlement to qualified assistance, suitable rehabilitation measures and helping-aids as entitled by the Social security law in Germany. However, the federal structure of Germany has led to unique challenges in implementation of the law by the 16 federal states.An introduction to the medical defination of deafblindness in Germany, which forms the legal basis for the much-needed adequate support for the deafblind population. The implementation of the German social security code (SGB IX) and Federal Participation Act (BTHG) is different in each Federal state. This results in various entitlement benefits. This presentation is providing an overview to deafblind specific support and intervention services provided by Deutsches Taublindenwerk in the above context.The unique challenges in implementation of the law by the German federal states have consequences for the Deafblind service providers. Their future projects need to adapt accordingly. The situation is further complicated by the lack of Deafblind specific ICF health core sets. There are only eight years left for the world to achieve the Sustainable Development Goals (SDGs). The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was ratified by 185 nations. The international co-operation and exchange of best practices provides an effective way to achieve development for all, including Deafblindness.
Services & Resources
POSTER: 15D - Improving Access to Data on People who are DeafBlind: A Path Forward
Megan Conway
United States

The purpose of this presentation is to describe recent efforts by the Helen Keller National Center (HKNC) and partner organizations to improve how data about DeafBlind people is collected and shared.In 2021 HKNC launched a research project in collaboration with the National Center on Deaf-Blindness and Perkins School for the Blind to compile and analyze literature that illustrates and describes the problem and defining and collecting data about people. We also examined current surveys and registries that collect data about people in the United States. In 2022 we will publish a White Paper outlining the results from our research and identifying actionable next steps for improvement.The presentation will outline the findings from our White Paper including recommendations and next steps that have been implemented in the last year and that are planned for the future. Our findings indicated broad discrepancies in how, if at all, the term is defined and how, if at all, data is collected about. We found that the terminology and parameters that define the population of people who are DeafBlind varies considerably in the literature and across survey and registry sources. Additionally, demographic and functional impact data on DeafBlind people is inconsistent and inaccessible. These factors compound each other resulting in a lack of empirical evidence about the size, characteristics and service needs of people who are DeafBlind.We recommended a number of next steps to address these problems, including specific recommendations to (a) raise awareness and improve collaboration (b) address gaps and Inconsistencies in existing national surveys and registries, and (c) advocate for allocation of resources for data collection, research and access to demographic Information.

Services & Resources