Focus on opportunities for children who have deafblindness
“Everyone has to achieve their full potential. It’s a bloody human right”, says Hans Erik Frölander1 who has been the coordinator of the Nordic Network on Cognition since 2008. The network is facilitated by Nordic Centre for Welfare and Social Issues, an institution within the Nordic Council of Ministers2.
The network’s goal is to develop tests to assess the cognitive development of individuals with congenital deafblindness or those becoming deafblind early in life. The purpose of these tests include assessing the child’s cognitive abilities to assist specialists to provide appropriate stimuli to enable the individuals continual development.
When we talk about cognitive functions we mean those processes which take place in the brain when we receive, process, and transmit information i.e, the ability to think, feel, and learn. But how do we know which cognitive abilities the child has if they are born deafblind or become deafblind early in life? How do you examine a child who is unable to develop speech because of impaired sight or hearing?
There are many standardized psychological tests, but they are seldom usable for this group of children born with or have early childhood onset deafblindness, since those tests require functional hearing and vision, says Hans Erik Frölander.
We need special tools and guidelines to be able to make cognition assessments of people born with or with early childhood onset deafblindness. This is why the “Nordic network on cognition” was established seven years ago.
One reason we wanted to look at this question was that people with early onset deafblindness often have an additional diagnosis, for example intellectual disability or autism, says Hans Erik Frölander.
The higher frequency of intellectual disability and autistic disorders depends partly on the fact that some of those who are affected by deafblindness have another syndrome which includes intellectual disability. This developmental delay could also be explained by the lack of access to auditory and visual information leading to a lack of understanding how people think and feel. But according to Hans Erik another explanation for higher frequency of these diagnoses could be misdiagnosis due to a lack of competency on the part of those doing the tests.
The people who are testing might not have enough knowledge about deafblindness and not recognize the importance of sight and hearing, Hans Erik explains. Of course, it’s serious if the diagnoses are not correctly identified since the child won’t receive the proper support.
The network has laid out guidelines for how the tests should be done. It’s a big step in our work, says Hans Erik.
The material is aimed at professionals who work with the testing of children with deafblindness. The aim is to increase competence among professionals to observe, describe and assess the cognitive abilities of those people with deafblindness. Those who conduct the tests need to have the right tools to make a correct and fair observation of the child’s level of development. If we get a good picture of the child’s development level then we can provide appropriate stimuli to support their development, says Hans Erik.
If an accurate test is made, it can result in practitioners understanding the obstacles to each child’s development. Knowing this, the child’s physical environment can to be adapted to help the child develop to their full potential. Part of this is developing proper educational methods to assist parents and care staff to interact better with these children. Adapting the environment through proper practices for each child will ensure better development.
The brain needs proper stimulation. The lack of appropriate stimulation often results in these children developing self-harming behaviours, says Hans Erik.
The network’s efforts are about spreading the newly developed guidelines3 throughout the Nordic countries. One of the methods adopted by the network is training courses organized by the Nordic Centre for Welfare and Social Issues.
The goal is that more children with deafblindness will be tested in the right way as the first condition to be provided the proper opportunities to achieve their full potential. It’s a bloody human right, says Hans Erik emphatically.
Prepared by Victoria Henriksson, Communications Officer, Nordic Welfare
1 Hans Erik Frölander is the coordinator of the cognition network. He works as a psychologist at Resurscenter Dövblind ,
a Resource Centre for Children and Young People with deafblindness. He is also a PhD student at Örebro University.
2 The Nordic Council of Ministers is the official inter-governmental body for co-operation in the Nordic Region. (www.norden.org/en/nordic-council-of-ministers)
3 “Guidelines for Assessment of Cognition in Relation to Congenital Deafblindness”: http://nordicwelfare.org/Guidelines-for-Assessment-of-Cognition-in-Relation-to-Congenital-Deafblindness.
The Nordic Network1 on Cognition
This network, formed in 2008, consists of around 20 members, predominantly psychologists and educators from within the field of deafblindness, several of whom are also connected to universities. The membership is spread across the Nordic countries, Switzerland, the Netherlands and Great Britain. The network is facilitated by the Nordic Centre for Welfare and Social Issues2.
The Cognition Network was established to involve the fields of physiology, neuroscience, cognitive and developmental psychology, social psychology, pedagogy and semiotics3.The starting point has always been one of practicality, about sharing experiences and developing competence.
It is difficult to assess the cognitive abilities of people with deafblindness. Expressions are not easy to interpret, especially those with congenital deafblindness. While this project has been focusing on this sub-group, the network also examines those with acquired deafblindness, in particular studying their potential cognitive decline. Tools and analytical models are very much lacking in both cases. The project has therefore aimed to improve the competence among professionals to understand, observe, describe and assess cognitive abilities of persons with deafblindness.
As the tactile modality is of utmost importance in deafblindness, the network has also strived to increase knowledge about physical tactile cognition. The network strives to develop methods and guidelines applicable in optimal settings, thereby including knowledge about aspects of deafblind communication.
Network members are currently trying to adapt existing infant and child developmental scales to those with deafblindness. Other examples include: adapting a common memory test for the elderly to use for individuals with acquired deafblindness; preparing a checklist to record the tactile working memory for those with congenital deafblindness, and developing a special executive function screening test adapted for individuals with congenital deafblindness. The network has also been taking steps towards an analytical procedure to evaluate social cognition in the context of tactile communication.
This developmental work will continue within the network, bringing together practical experiences from the field, theoretical knowledge and scientific findings. The network intends to transmit their new knowledge through various publications, conference presentations and individual exchanges.
For more information, contact: Hans Erik Frölander, Coordinator, Nordic Network on Cognition (Email: firstname.lastname@example.org)
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