Presentation and Recordings from the Deafblindness: The Challenges of Identification 17th - 18th November 2021

The conference will present different challenges in developing guidelines for identification and assessment practices and will address issues related to grey areas. New alternative updated ways of thinking about inclusion criteria and differential diagnostics will be discussed.

 

 

17th November

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    Anne Nafstad

    Anne is a psychologist specialised in congenital deafblindness and communication. She has worked in the field of deafblindness since 1982, with a special focus on the identification of congenital deafblindness. She has contributed to staff training and higher education in the Nordic countries and internationally through collaboration with the Nordic Welfare Centre (NVC), the University of Groningen in the Netherlands, and University of South East Norway (USN)  She is currently employed at the Unit for Dual Visual and Hearing loss and Deafblindness at Statped, Oslo. She is also a part time lecturer at University of South East Norway (USN).

Thematic block 1: Perspectives on identification and differential diagnostics. Chair: Britta Nilsson

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    Kolbein Lyng

    Kolbein Lyng, psychologist, Mag. art./Phd. Retired professor of Health Sciences. He collaborated with Else Marie Svingen to develop a screening tool for the identification of severe dual sensory loss in old age (SDSL).
    Kolbein Lyng also lead a project on aging and autism at the Autism Unit at the University of Oslo.

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    Terje Nærland

    Terje is psychologist, PhD and researcher at the Children and Youth clinic, Oslo University Hospital. He is also researcher and Director of K. G. Jebsen Center for neurodevelopmental disorders, University of Oslo. The centre is doing research on autism and other developmental disorders, and work to find the mechanisms behind the diagnosis by combining what is known about the disease with new knowledge about genetics and brain development. Enormous amounts of data from large national and international registers together with clinical trial collections, will form the basis of the centre’s research.

Thematic block 2: Complexity and grey zones. Chair: Anne Nafstad and Saskia Damen

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    Jesper Dammeyer

    Jesper Dammeyer (Phd. Doctor Med.) has researched deafblindness from various perspectives including prevalence, etiology, communication, tactile language, and mental health. He is based at the Department of Psychology, University of Copenhagen.

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    Jude Nicholas

    Jude Nicholas (PhD) is a licensed clinical neuropsychologist and is currently employed by Statped and Haukeland University Hospital in Bergen, Norway. Nicholas has 25 years of clinical and research experience working with children and adults with sensory impairment.

    His current research focuses in particular on tactile cognition.

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    Knut Slåtta

    Knut is a psychologist, working at the national support system for special education in Norway (Statped).

    His main fields of interest are educational approaches, that bridge learning and quality of life, for people with multiple disabilites and complex communication needs.

Thematic block 3: Genetic diagnostics, early detection and early intervention. Chair: Britta Nilsson

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    Claes Möller

    Claes Möller MD, PhD, is an Otolaryngologist (ENT) and Professor of Audiology and Disability Science at Örebro University and the Audiological Research Centre, Örebro University Hospital. Professor Möller’s research encompasses genetics, otolaryngology, otoneurology, pediatrics and audiology.

    His recent research focuses on interdisciplinary, bio-psycho-social approaches to deafblindness within the Swedish Institute for Disability Research at Örebro University.

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    Britta Nilsson

    Britta Nilsson is a Psychologist. She is an experienced academic in the field of rare disorders through her former position as Director at the Frambu Resource Centre for Rare Disorders. As a researcher at Sintef she has been engaged in studies on Augmentative and Alternative Communication (AAC).

    She is currently head of the The National Interdisciplinary Team for Identification and Diagnosis (NTT) in Norway.

    Arvid Heiberg

    Is a Norwegian physician and professor of medicine, best known for studies in social medicine, genetics and guidance of families living with hereditary conditions. He became Norway’s first full-time expert in medical genetics on the Oslo Health Council. From 2002, Arvid has been a Professor II at the University of Bergen. He is a Team member of The National Interdisciplinary Team for Identification and Diagnosis (NTT) in Norway.

     

18th November

Thematic block 4: Complexity and grey zones in clinical practice. Chair: Jude Nicholas

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    Saskia Damen

    Saskia (PhD) works as an assistant professor inclusive and special needs education with a specific focus on deafblindness at the University of Groningen in the Netherlands. She coordinates an international Masterprogram in Deafblindness at the department of Pedagogical and Educational Sciences at this University. She also works as a senior researcher at Royal Dutch Kentalis. She has over 20 years of work experience in the field of sensory disabilities and deafblindness. Her current research focuses on both congenital and early acquired deafblindness.

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    Henriette Hermann Olesen

    Henriette Hermann Olesen is a Special Educator with long experience in the field of deafblindness, and congenital deafblindness. She has worked with training consultant educational staff members and advising parents. She is a former employee of the Nordic Welfare Center and is currently the Head of Department for special advisors working with congenital deafblindness in Denmark. She is Vice President of Deafblind International and has contributed to the work of revising the Nordic Definition of Deafblindness. Her next project will be participating in the establishment of the Nordic guidelines for identification.

Thematic block 5: Identifying deafblindness in the elderly population. Chair: Britta Nilsson

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    Else Marie Svingen

    Else Marie Svingen is a Special Educator reacently retired from the field of dual sensory impairment and Deafblindness where she has worked since the1980s. She is a former Head of the unit at Statped in Oslo where she contributed significantly to the fields of acquired and congenital deafblindness through her research, teaching, rehabilitation work, professional training and management. Her research work focused on the quality of service provision for elderly people with dual sensory loss, in close collaboration with Kolbein Lyng.

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    Jude Nicholas

    Jude Nicholas (PhD) is a licensed clinical neuropsychologist and is currently employed by Statped and Haukeland University Hospital in Bergen, Norway. Nicholas has 25 years of clinical and research experience working with children and adults with sensory impairment.

    His current research focuses in particular on tactile cognition.

    Else Marie Svingen

    Else Marie Svingen is a Special Educator reacently retired from the field of dual sensory impairment and Deafblindness where she has worked since the1980s. She is a former Head of the unit at Statped in Oslo where she contributed significantly to the fields of acquired and congenital deafblindness through her research, teaching, rehabilitation work, professional training and management. Her research work focused on the quality of service provision for elderly people with dual sensory loss, in close collaboration with Kolbein Lyng.

Thematic block 6: Collaboration: steps towards shared identification practices and comparable data. Chair: Jude Nicholas

  • Britta Nilsson

    Britta Nilsson is a Psychologist. She is an experienced academic in the field of rare disorders through her former position as Director at the Frambu Resource Centre for Rare Disorders. As a researcher at Sintef she has been engaged in studies on Augmentative and Alternative Communication (AAC).

    She is currently head of the The National Interdisciplinary Team for Identification and Diagnosis (NTT) in Norway.

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    Maria Creutz

    Maria works as a senior advisor at the Nordic Welfare Center, where she is responsible for the deafblind issues. Prior to that, she worked for almost 30 years in a Swedish non-profit organisation who provide services for persons with disabilities. Mainly with deafblind issues but also as a leader in various overall functions. Her focus is human rights for people with disability, especially the ethical perspective when it comes to self-determination and participation.

    As a young adult man in the family has congenital deafblindness, she also has personal experiences.

     

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    Marleen Janssen

    Helena Johanna Maria (Marleen) Janssen is Professor of Orthopedagogics at the University of Groningen. She is the first professor in the world to specifically focus on communicating with early acquired and congenital deafblind people.
    Marleen is the director of the University of Groningen Research Institute for Deafblindness that focuses on people with deafblindness and other communication disabilities. She holds a PhD from the Radboud University Nijmegen where she completed her thesis on harmonious interactions with Deafblind persons.

  • Anne Nafstad

    Anne is a psychologist specialised in congenital deafblindness and communication. She has worked in the field of deafblindness since 1982, with a special focus on the identification of congenital deafblindness. She has contributed to staff training and higher education in the Nordic countries and internationally through collaboration with the Nordic Welfare Centre (NVC), the University of Groningen in the Netherlands, and University of South East Norway (USN)  She is currently employed at the Unit for Dual Visual and Hearing loss and Deafblindness at Statped, Oslo. She is also a part time lecturer at University of South East Norway (USN).