martes, 6 de octubre de 2009

Artículo: Digital supports for persons with multiple disability and complex communication needs

María del Carmen Malbrán
Facultad de Informática – Universidad Nacional de La Plata, Argentina

Abstract. Digital supports are changing the vision about people who suffer multiple disability and complex communication needs, giving them the chance of expressing ideas, needs, expectancies and interests. Oral and written language may be complemented or even replaced by visual – spatial and auditory codes –pictures, icons, sounds and words mediated by the computer. Lack of motor control is not an insurmountable obstacle when the response can be given on a digital keyboard.
The accessibility to these devices needs training in relatives, institutional staff, web designers, teachers, peers, friends and persons with disabilities, as well as matching between shared computer engagement and human interaction.
The development of digital tools grows rapidly demanding a continuous effort for adaptation to particular persons and situations.
The illustrative cases presented in the article were taken from the literature, the mass media and the author`s experience.
Available information shows the relevance of digital resources for improving communication and questions predictions about the real abilities of persons with multiple disabilities and complex communication needs.
Communication is the essence of social human life. Digital supports combined with a person centered approach opens a more promising future for people with multiple disabilities and complex communication needs.

Keywords: digital supports – multiple disabilities – complex communication needs – person centered approach

1 Introduction

Multiple disability alludes to a condition where the person has significant restrictions in more than one of the following areas: sensory, motor, cognitive and emotional. These limitations affect the quality of life in many ways. One frequent loss affects communication: the person cannot speak being his/her language mimic, gestural and/or guttural. Many of them are non – verbal having little or no speech reliant on hand movements (point to object), facial expression and body language. Understanding unconventional communication requires an effort for interpreting the meaning of corporal expressions such as pointing, gesturing, moving the body closer, touching the computer screen, eye gazing, looks and vocalizing.
Communication through fragmentary signs demands a great need for inference, questioning and guessing by the listener. To facilitate this task alternative and augmentative communication systems have been developed. These systems can be adapted to the computer.
Multiple disability may appear at any time of living due to different cause. Usually the situation becomes chronic turning into a lifelong condition.
Intervention and rehabilitation are focused on three areas: giving supports, enhancing inclusion and encouraging empowerment. Action is aimed at improving communication, building self determination and autonomy and assuring the quality of life.
Multiple disability may also be seen as a set of barriers coming both from the individual traits and to the physical and social context. As it was said, persons with multiple disability usually have complex communication needs being subjected to a dual vulnerability: biological and environmental, running risks of social deprivation and experience of failure. Appropriate environmental conditions suppose fighting and overcoming these obstacles.
An important distinction is determining the cognitive status in order to bring digital assistance according to the characteristics of the involved person and the available supported technology. The aim is always to reduce the limitations at a minimun.
The training of human resources must be taken into account. Sophisticated layout and structure may be an obstacle to implement adequate supports for the person, the human mediator and the context.
Digital technology is going to change our current views about multiple disability. Moreover, the access to digital culture may be considered as a matter of human rights.
The criteria based on the remainder abilities are being replaced or complemented by the determination of the kind, extent and length of needed supports. The diagnostic baseline focuses on the selection of tools attending the cognitive status in terms of the previous knowledge, the extent of understanding symbols, signs and pictures, the motor capabilities – body, hands, leg and mouth, and facial movements as eye blinks and whispers. These indicators lead to making decisions about the kind, the amount, the lasting and the continuity of digital supports.
The exploration is also oriented to inquire the individual dependence on others to meet basic daily needs, the relative absence of verbal skills, the sensory loss and the severity of motor difficulties. Collecting information includes the behavioral state of the person, the social context, the communication partner and the communication indicators.
Designing digital aids must pay attention to the cultural relevance of symbols, number of exposure, guarantee of its continuous use, association between pictures and icons , part – whole perception, directionality and familiarity. The aim is to produce positive behavioral, cognitive and emotional outcomes.
To do so professionals, caregivers and support persons have to be trained on:
- the potentialities of different digital devices;
- the availability of digital resources;
- the selection according to particular needs;
- the abilities for making adaptations;
- the wittedness for introducing innovations;
- the nonconventional ways of communication.
Examples of suitable existing tools for improving communication are:
- special alphabet using multimedia;
- sensitive to touching screen;
- magnetic ring that receives the sounds amplifying them and sending to a wire. Persons who use earphones with phone bobbin can access the magnetic space;
- eye mouse where the computer can be operated and controlled by visual movement. The screen verbalizes the text lines, paragraphs, words and letters;
- bionic prothesis such as arms, legs, hands and eyes ;
- Braille computer keyboard;
- video console for people who have suffered brain accidents.
Areas of application of digital means are mobility, domestic living, communication, and social interaction in formal and informal environments.
Person centered digital technology is aimed at:
- enhancing communication;
- reducing dependence;
- diminishing obstacles and barriers;
- increasing self - confidence and self - determination;
- avoiding isolation;
- respecting human rights;
- improving the quality of life;
- helping empowerment;
- expressing preferences and choices in meaningful ways;
- widening inclusion;
- making decisions;
- active participation;
- communicating expectancies, motives, interests, needs, likes and dislikes, moods, satisfaction, sadness, fears, anger; temper outbursts;
- expanding the body;
- supporting everyday life:
- providing alternative and augmentative communication.

2 Illustrative cases

The British Stephen Hawking born in 1942 suffers amyotrophic lateral sclerosis (ALS) called Lou Gehrig Disease. He is a widely known astrophysics, author of the theory of the black holes. He neither speak nor move his hands and legs. He only does slight facial expressions with the muscles around his eyes, eyebrows, cheeks and mouth. He speaks through a computer selecting the words presented on a screen with a sensor placed on a helmet that detects his cheek movements.
He obtained a PhD in Cambridge University where he is a professor on Mathematics.
He has received many important distinctions and honoris causa doctorates from a lot of universities all over the world. His latest production includes a text “The theory of all” (2008) and a book for children “George`s secret key to the universe” written in collaboration with his daughter. The book tries to explain the main secrets of the cosmos in plain language.
In 2007 he had the experience of floating in an environment free from gravity in a flight of the Zero Gravity Corporation.
The French Jean Dominique Bauby born in 1952, died on 1997, suffered the Locked In Syndrome. He was the editor of the Elle magazine. At 44 he was victim of a cerebral vascular accident (CVA) surviving for two years. The only way of communication was the left eye blink. The language therapist modified the alphabet order putting in the first places the most frequently used French letters. She told Jean the letters in a loud voice and he indicated yes (one eye blink) or no (two eye blink).Doing so he was able to dictate words and sentences. The strategy allowed him to write a book entitled “Le scaphandre et le papillon” (The diving bell and the butterfly) working with an assistant in a three hours daily schedule. The book reflects his experience. He called himself an exiled in is own body, a shipwrecked, trapped in a diving bell.
The situation would have been different if Jean had had a digital aid giving orders to the computer using the eye blink. He would have been more autonomous avoiding emptiness, boredom and solitude during the lasting time he was alone, by his own means.

3 Cases from Argentina

Juan . Aged 17. Multiple disabled. Seizure episodes. He cannot walk or speak. Reduced facial expression. Digestive troubles due to the motor restriction. He only eats mashed food. Early diagnosed as profound intellectually disabled, later as an autistic. In his infancy he went to special schools changing from one school to another without evident progress. His mother looked from training in the United Kingdom. There she were used to digital means to meet the challenge. An individual digital system was designed. Using a special keyboard connected to a computer he translates words on the screen. He learnt to read and write completing elementary and secondary education.
Besides he integrates a group of self - advocates. In 2007 he went to Washington participating in an international meeting, was interviewed in a TV program and wrote a letter published in the Disability Tribune about the denied rights of multiple disabled people.
The case of Juan C. shows:
- very collaborative relatives and friends;
- suitability of digital resources;
- cognitive and emotional progress;
- improve of communication;
- loss of time for effective action.
Jorge. Elected Parliament representative in the October 2007 voting elections. In November 2007 he was assaulted at the door of a pharmacy near his house in a neighbouring district of Buenos Aires. He was severely beatened with a screw. As a consequence he was found unconscious laying on the floor. He was sent to hospital suffering cranial trauma, brain haemorrhage, tetraplegic and breathing difficulties. He lost mobility and language and was confined to a wheelchair. A special communication device was designed by a friend of him. The programme called HadaSoft contains modules combining writing and speech production. The keyboard is added to a webcam that allows him to move the cursor with his looks and a synthesizer reproducing the selected words translated into the local language. The webcam is programmed for following the head movements, particularly the eye J.R. is able to clicking with his point finger. After 17 months from the attack he sworn in as a Parliament deputy. By means of the digital aid he is able to “talk” and to send messages as any other representative.

4 References

Articles from the press and magazines: The New York Times, Argentine Newspapers ( Clarín, La Nación, Perfil)
Brown,U. & Percy,M. Eds. : A Comprehensive Guide to Intellectual & Developmental Disabilities. Baltimore: Paul H. Brookes Publishing Co.(2007)
J.C. : Personal Communication
Hawking, S. W. :
Malbrán, M. del C. Digital communication supports for PMID. Journal of Intellectual Disability Research, 52, parts eight & nine, 773. (2008)
Malbrán, M. del C. IASSID 13th World Congress. Symposium on Communication and interaction with Persons with Profound and Multiple Intellectual Disabilities (PMID). South Africa: Cape Town. (2008)
Mitchell, J. & van der Gaag, A. Through the eye of the Cyclpos: evaluating a multi – sensory intervention programme for people with complex disabilities. British Journal of Learning Disabilities, 30,159 – 165 (2002)
Mayer, R. E. Ed. : The Cambridge Handbook of Multimedia Learning. Cambridge University Press, New York (2005)
Scherer,M.J. & Craddock. G.Matching Person & Technology (MPT) assessment process. Technology & Disability, 14, 125 – 131. (2002)
Schnabel, J. Film Director: The diving bell and the butterfly (2007).
Telecapacitados: el Teletrabajo para la inclusión laboral de las personas con discapacidad. La escafandra y la mariposa. Editorial Planeta.
(www references accessed July 2009)

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Digital Supports For Persons With Multiple Disability And Complex Communication Needs by María del Carmén Malbrán is licensed under a Creative Commons Reconocimiento-No comercial-Sin obras derivadas 2.5 Argentina License.
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