Poster presentations - group C

PRESENTATION TIMES

Wednesday, July 26, 2023

  • 9:30 AM - 10:00 AM
  • 3:15 PM - 3:45 PM

Thursday, July 27, 2023

  • 9:30 AM - 10:00 AM
POSTER: 1C - The Instrument for Experiencing Time (I.ET): The Development of an Instrument for Tactilely Experiencing the Start, Duration and Ending of a Waiting Moment
Christine Oskamp-Maas
Netherlands
On the poster the recently developed Instrument for Experiencing Time (I.ET) will be presented, as well as the outcomes of a study to measure the effects of the I.ET on the wellbeing of 5 participants with deafblindness and an intellectual disability. To support persons with deafblindness and an intellectual disability to experience predictability and a feeling of safety, the environment can be structured with regard to time, person and place (Van Dijk, 2015). Due to the deafblindness it is hard to perceive and interpret the physical and social environment. In addition, the intellectual disability limits compensation strategies. Estimating the duration of, for instance moments of waiting, is difficult. When clarification lacks in time-related questions, it can result in negative emotions like anger or sadness. Waiting, especially when it is unclear for how long or why, can increase intensity of the expressed emotions (Damen & Worm, 2013). Existing tools that give insight in the duration of waiting, like an alarm clock or a time-timer, lack a tactile component and are too abstract. For this reason, Royal Dutch Visio, Bartiméus, Royal Dutch Kentalis and a design agency developed the Instrument for Experiencing Time (I.ET). With the I.ET, the start, duration, and ending of waiting can be experienced tactilely. The effect of the use of the I.ET on wellbeing during waiting will be measured in 5 participants with deafblindness and an intellectual disability. Individual goals will be set and evaluated using goal attainment scaling. The results are expected in the course of 2023. Conclusions will be drawn after the results are available.
Latest Research
POSTER: 2C - Development and Use of the Auditory Profile in Intensive Visual Rehabilitation - A Multisensory Approach
Annette Bootsma & Ton Roelofs
Netherlands
The aim is to present the background and design of the auditory profile, developed within the intensive rehabilitation for the visually impaired. In addition, practical experiences with this profile and its added value within intensive visual rehabilitation programs will be presented. In the case of visual impairment, a well-functioning auditory system is essential to be able to compensate for the visual impairment. In visual rehabilitation, attention is therefore required for the quality and the compensatory capacity of the auditory system. However, it is not sufficient to only perform objective auditory measurements, as this does not express the cooperation between the senses.In our approach, in addition to the objective auditory measurements, both an anamnesis and questionnaires are taken, regarding the auditory experience at the activity level. The objective and subjective results are processed into an auditory profile. The hearing functions based on the questionnaires are an essential part of this profile.This auditory profile has been used for some time by professionals in intensive visual rehabilitation. This multi-sensory approach appears to have added value in the recognition of hearing impairment in visually impaired people. In addition, this approach provides insight into compensation options during the visual rehabilitation programs.
Services & Resources
POSTER: 3C - Navigating Deafblind Culture and Hearing Sighted Culture in the Workplace
Mélanie Gauthier & Elio Riggillo
Canada
To share the successes and challenges of managing an employee who is deafblind and in turn, the successes and challenges of being supervised by a hearing and sighted manager. The aim of our presentation is to promote the employment of individuals who are deafblind and highlight the value of their lived experiences in the workplace. We will share our ongoing journey as we navigate our employer/employee relationship. In 2019, Elio Riggillo was hired as the Consumer Relations Coordinator at Canadian Helen Keller Centre (CHKC). Elio is deafblind. This is a story of advocacy, education and determination as Elio, his manager and co-workers navigate the fusion of deafblind and hearing sighted cultures. We will share our successes and challenges and highlight what we have found to be key in fostering an inclusive work environment. We will show that with the right supports and allies, an individual who is deafblind can thrive. Once we integrate accessibility and inclusion as status quo in the workplace, anything is possible. This presentation is relevant because individuals who are deafblind want to work, we can demonstrate from our perspective and experience how we were successful.
Lived-Experience Knowledge Sharing
POSTER: 4C - Being a Parent When Having Deafblindness
Agneta Anderzén Carlsson
Sweden
To describe experiences of being a parent when having deafblindness. Research on parenting when having deafblindness is limited, but necessary for determining the needs and find arguments for adapted support to fulfil parental responsibilities. Thus, the aim was to describe experiences of being a parent when having deafblindness.The design and spreading of information of the study was conducted in collaboration with the Family Section of the Swedish Association of the Deafblind. Fourteen parents with deafblindness participated in individual interviews. Signed, spoken or tactile language was used in the interviews, depending on preference. The interviews were transcribed verbatim and analysed by qualitative content analysis.Being a parent and living family life was something very positive; it created feelings of happiness, satisfaction and fulfilment. The parents managed, was compensating for the consequences of deafblindness and experienced that their unique situation contributed to personal growth in the children. Nevertheless, parenting was not always easy; some situations caused sorrow and distress. Sometimes, things did not work according to plan and the parents experienced that they could not fully support their child, who then became disadvantaged. Assistance from family members and society was needed, but not always offered. Having deafblindness could cause obstacles with regard to parenting, which risk shadowing the joy of being a competent parent. Support was sometimes lacking, which affected the whole family. There is a need for collaboration between parents and societal actors to tailor parental and family support, to safeguard the health in the families.
Lived-Experience Knowledge Sharing
POSTER: 5C - Cortical/Cerebral Visual Impairment (CVI) and Deafblindness: Commonalities and Implications
Marguerite Tibaudo
USA

Cortical/Cerebral Visual Impairment (CVI) results in a series of visual behaviors consistent with ventral and dorsal stream dysfunction, causing difficulty with visual attention and visual recognition. There are shared risk factors for both CVI and deafblindness, with 50% of the student population within the Deafblind Program at Perkins being diagnosed or medically suspected as having CVI. This poster session will identify risk factors, related challenges around visuospatial processing, visual field deficits, and impaired motion perception and raise questions around the consideration for assessment, including the visual accessibility of sign language, with the goal of supporting the perusal of future research.

Latest Research
POSTER: 6C - Anne - Barrier Free Communication App
Maddalena Zampitelli
Italy
Presentation of a new app that helps to communicate with people with the use of gestures and vibrations of the iPhone. The app translate from Voice to Morse, allowing people to communicate internationally and barrier-free. The app doesn't need to be seen as it works with finger gestures only, such as taps and swipes. Can be opened with a phone back tap. We are a team of developers and we worked on a no-profit project with the Italian association for deafblind people (Lega filo doro) to release an app for iOS to help deafblind people to communicate. We offer a valid alternative to expensive and impractical devices for transport. Our hope is that it will become easier to communicate with those unfamiliar with deafblind languages and to find independence even if it were only to go to the pharmacy alone and communicate with the cashier.The presentation will show the research process, and we will teach basic morse and how to use it. The app doesn';t need to be heard nor seen, it works with haptics. It's completely user-friendly with gestures, morse, and vibrations. Even opening it is done with the double back tap. It requires onboarding with a caregiver.We want to empower a younger (but also older) community of deafblind people so that they can be more independent and will not be left behind. The app has been endorsed by Lisa Jackson, and we are currently working with the Canadian Helen Keller center to develop it. It is already on the App Store, it's called Anne in honor of Anne Sullivan. For now, the app is receiving good media success with very little advertising and has been endorsed by Apple Vice President Lisa Jackson. We'd love to reach the right people because our goal is to help as many people as possible.
Services & Resources
POSTER: 7C - DeafBlind Victoria Self Advocacy Group
Trudy Ryall
Australia
Self-advocacy groups like DeafBlind Victoria can run efficiently by deafblind people and for deafblind communities. DeafBlind Victoria started with 3 deafblind people wanting to make a difference for deafblind people and communities. The aim is to encourage deafblind communities to start as self-advocacy groups. The content will cover the history of DeafBlind Victoria and all the steps to create changes for the group and the members. The relevance is that self-advocacy is an important process to create changes. DeafBlind Victoria is based in Melbourne Victoria Australia. We will discuss the processes DBV took from over 15 years ago started with no funding supported from 3 deafblind volunteers to today there is paid 5 deafblind staff. This is people who live with deafblindness. The activities Deafblind Victoria run such as: Applying for grants, Monthly arts and craft activity, lobbying to government to provide equal access, Running workshops like COVID safety and DeafBlind Mental Health. DeafBlind World Training, Information Technology information sharing, Raising awareness about deafblindness, Peer mentoring for example a deafblind person teaching another deafblind person skills like braille.
Lived-Experience Knowledge Sharing
POSTER: 8C - COVID Lessons Learned, A Review of Intervenor Services at Canadian Helen Keller Centre (CHKC)
Renee Toninger
Canada
The purpose of this presentation is to share with others the feedback we received, and lessons learned, while continuing to provide intervenor services at Canadian Helen Keller Centre. At the Canadian Helen Keller Centre (CHKC), we dusted off the Pandemic Plan, rallied a team and worked together to navigate the ever-changing public orders, fears and personal needs to continue to provide intervenor services during COVID. We are eager to share several examples of what we’ve learned along the way.In this workshop, we will share with you feedback we received from consumers, frontline staff, and leadership on our challenges, successes, as well as our solutions. Themes emerged including: changes to services and supports, securing necessities such as food and medications, mental health, compensation, cleaning and PPE, and protocols and processes related to screenings, vaccines, testing, isolation and outbreaks. Given the nature of what we do, it is not surprising that the importance of effective communication is woven throughout these themes, and ultimately is the key to success.The future is in our hands. We are better prepared for the future and hope others will value what we've learned during COVID.
Services & Resources
POSTER: 9C - Sexuality and Deafblindness: Breaking Down Barriers by Initiating Dialogue
Mélanie Gauthier & Leesette Morales
Canada

Share data about deafblindness and sexuality; start a conversation. Our goal is to invite and inspire service providers and people who are deafblind globally, to open the dialogue and create awareness about sexuality and deafblindness.  This presentation will explore the idea of sex and sexuality and how the barriers, stigmas and complexities involved in supporting adults and seniors living with deafblindness, can be broken down by initiating and creating an open dialogue.  Resources on sexuality and adults living with deafblindness are either outdated or non-existent. Most common and prevalent publications on the subject relate to preparing children for developing their sexual identity.  Initiating a positive and open dialogue can create appropriate support to adults and seniors who are deafblind. Sexuality is a basic human need and not a privilege. Advocating and encouraging the person who is deafblind to embrace their identity and sexuality can lead to a healthier state of mind and well being. Sexuality is an integral part of the personality of everyone: man, woman and child; it's a basic need and aspect of human beings that cannot be separated from other aspects of life. This is why it is relevant.

Latest Research
POSTER: 10C - Informed Consent and Data Collection Procedures: Lessons learned When Working with Persons Living with Deafblindness
Norman R. Boie
Canada
This poster presentation is intending to inform all individuals involved in the research process about the variability and flexibility that is needed during the process of informed consent and data collection with persons living with combined vision and hearing impairment. Multiple access barriers exist for persons with deafblindness that want to participate in research activities. Within the context of a larger project on deafblindness and health services access during the COVID-19 pandemic in Canada, we recruited 32 persons with deafblindness in Ontario and Quebec. This presentation summarizes the processes and adaptations we developed to allow our research participants with deafblindness to access and complete their informed consent process independently. In addition, we describe the adaptations we implemented to facilitate qualitative interviews in the most autonomous way possible. The process of informed written consent is not easily accessible for persons with deafblindness, and its administration is often regulated by institutional review boards with little flexibility. Therefore, we converted our approved consent text into free-format electronic versions or paper-format without logos, lines boxes, or bullet points, to facilitate easy access through scanners or screen readers. For participants who communicated through interpreters or family members, we simplified the consent process to make interpretation into sign language easier and faster. Verbal consent could be recorded for individuals where paper signatures posed a barrier. For the administration of demographic questionnaires, we eliminated check boxes (not accessible to scanners/screen readers) and opted for verbal or signed response formats that could be more easily recorded.The experience of developing and implementing these adaptations greatly contributed to the experience of our participants, and increased the capacity of our team members. Researchers developed a skill centered around flexibility, patience, respect and trust, thereby improving communication and empathy.
Latest Research
POSTER: 11C - Emergency Preparedness Fire Safety
Laurie McBride & Kacie Weldy
United States

Preparing for and responding to emergency and disaster situations within the DeafBlind community requires education and training of DeafBlind individuals utilizing self-efficacy, self-advocacy, and self-preservation to save lives, bring about awareness within the DeafBlind community, mitigate damages and costs. The Emergency Preparedness Fire Safety will engage and educate the audience about the following key concepts that will ultimately lead to Self-Efficacy, Self-Advocacy, & Self-Preservation. Fire Emergencies that happen in the home. What are the Kitchen Fire statistics? Fire and smoke detectors and Kitchen Safety. Developing a safer community for DeafBlind. The presentation will further introduce the following preventative measures, tools, and techniques that the DeafBlind Individual and their families can enact for prevention and survival during a fire in the home. Fire and Smoke Detector types and how to maintain. Kitchen safety Do's and Don’ts. Best Practices & Fire Prevention tools. What to do if there is a Gas Leak. Carbon monoxide safety. Generator safety. In conclusion, Emergency Preparedness Fire Safety, provides more in-depth information and education about Fire Safety in the home to prepare, plan and maintain safety methods which enable the DeafBlind person with their families to be self-reliant with tools and preparation, to be best prepared for prevention and survival during a fire emergency. 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: 12C - Independent and Safe Travel for Persons With Dual Sensory Impairment: Clinical Tool and Interventions
Marie-Claude Lavoie & Julie Dufoir
Canada
Sharing clinical experience acquired and supported by research for the development of auditory skills in people with dual sensory impairment (DSI) in order to improve safe and independent travel.For the past twenty years, researchers and clinicians in audiology and orientation and mobility (O&M) have been working together to optimize auditory skills for safe and independent travel for people with DSI. From this work has emerged the development of a clinical tool to evaluate and train auditory localization abilities, in a controlled indoor environment. Since the development of auditory skills in real travel situations for DSI's clientele can be long and difficult, this tool supports O&M intervention in an outdoor environment.The latest version of the tool called SELASPHERE will be presented. It consists of 20 loudspeakers placed at 18-degree intervals on 360 degrees and allows an auditory localization response to the nearest degree. Different evaluation and training protocols can be offered depending on the intervention objectives pursued with the client in relation to their desire to make or maintain safe and independent travel. The SOM-audiologist teamwork and examples of the use of the SELASPHERE in our clinical practice will be presented through case histories and videos. According to our clinical experience, the teamwork between SOM and audiologist with the use of the SELASPHERE allow us to be more efficient at targeting auditory localization difficulties and the required interventions, in order to promote safe and independent travels and contribute to a satisfying social participation for the person.
Lived-Experience Knowledge Sharing
POSTER: 13C - Exploring the Role of Touch in Developing Mobility Skills: Perspectives of DB Travelers and O&M Practitioners
Alice Klein
United States

The purpose of this presentation is to describe the role of touch in supporting the development of O&M skills. Little is understood about the ways that touch-based sensory information and communication are used by people who are Deafblind to support the acquisition of orientation and mobility (O&M) skills. O&M researchers have often excluded people who are deafblind and focused on individuals with intact hearing. This qualitative instrumental case study  describes the lived experiences of participants in using their senses of touch for mobility or for teaching mobility. Adults who are DB and O&M Specialists were purposively recruited through agencies, and consumer leadership organizations to participate in screening surveys and in online focus groups. Thirteen (13) geographically, linguistically and racially diverse DeafBlind adults, ages 20 to 76, participated in focus groups. Twenty (20) geographically and linguistically diverse O&M Specialists participated in focus groups. Themes from separate focus groups with DB adults and O&M Specialists were triangulated across investigators and data sources. Participants across both groups described touch as a sense for building spatial concepts and confirming the traveler's relationship to landmarks. Both groups independently expressed that many O&Ms are not well-prepared to support people who are DB to use the touch sense and that touch supports effective communication between the DB traveler and O&M Specialist on lessons. Both groups shared ideas of ways to adapt techniques and materials that integrate the use of touch for increased safety, efficiency and confidence.

Lived-Experience Knowledge Sharing
POSTER: 14C - "My Life Course Notebook - My Shared Memory"
Dominique Spriet
France
"My Life Course Notebook - My Shared Memory" is a digital tool that belongs to the person with a rare disability. It has been designed by/with and for people with Deafblindness The MCPV carnet has a threefold objective: Keep in one place the history, the experience of the person Create moments of pleasure shared with family and professionals. It constitutes the memory, as time goes on, that the person cannot share by usual means such as oral and / or sign language. An experiment was conducted over one year with 12 families, representing a panel of people in SHR aged 5 to 42 years (average age of 19 years), with various profiles including deafblindness. This experiment highlighted two main functions of the tool: on the one hand, a function of extension of the person to transcribe his specificities and remember his history and on the other hand, a function of mediator with the various actors present in his places of life, at home, at school, in services and residential homes. It also revealed the benefits of the MCPV for a heterogeneous audience and made it possible to identify human, environmental and technical barriers in its development, a crucial step to make it the most suitable and used tool possible.An evaluation of the experiment makes it possible to highlight that the MCPV is an adaptable and customizable tool according to the particularities of the person. Relatives of people in SHR are unanimous in saying that the notebook can gather a large amount of information about the life of the person. The owner invite other people so to share who he is.
Lived-Experience Knowledge Sharing
POSTER: 15C - Paths Into Employment: Development of New Vocational Rehabilitation and Training Services in Germany
Jana Martin & Marie-Luise Bolland
Germany

A project in Germany, funded by the Aktion Mensch Foundation for five years, is aiming to develop new and specialized vocational training and rehabilitation services that support individuals living with deafblindness in getting or staying in work. Three organizations cooperate with this project. We started with a needs analysis and developed a training program for professionals within the organizations imparting the specifics of deafblindness as a distinct disability. The aimed services are elaborated conceptually, and the concepts are then tested in practice for improvement. The developed services should be implemented into the German social system afterward. The needs analysis shows that a holistic assessment is central to a successful rehabilitation process and that there is a need for support during job searching. Rehabilitation professionals need to master different communication forms to ensure communication for all clients. In Germany, there probably is an average of 30 students with deafblindness graduating from school each year. Counseling services reported 273 persons with deafblindness looking for work-related services in 2020. Individuals living with deafblindness highlighted the importance of getting in touch with peers as well as raising awareness among employers and colleagues. They also called for individualized and recurring services and psychosocial support.  Besides the results of the needs analysis, we will present the elaborated concept of the basic vocational rehabilitation program and our experiences of pilot testing this service (piloting starts in 2023).

Services & Resources