I want to thank the scientific committee for giving me the opportunity of sharing experiences that I have from more than fifteen years of working with deafblind multiple disabled congenital children and acquired deafblind adults with all of you.

I also want to thank you all for coming, because I know that there are four workshops at the same time and I feel honoured that you chose this one. I hope that it reaches your expectations.

I will like to emphases that I will talk about persons born with deafblindness or acquire it during their life, no matter the age. As human beings, they do not have the same requirements for special needs. However, there are some common ones that I will refer to.

To me as a professional, the main goal that a congenital or acquired deafblindness will reach, is to be independent, to get independence they will need communication, and to be emotionally stable.

Talking about the psychological aspect, deafblindness as a sensorial condition that creates difficulties to interact with the environment and others, there are physical and attitudinal social barriers that have to pass through strategies, to avoid social and communicative isolation.

Communication is necessary to get information from the news on the radio or TV, books, restaurant menu, recipe book, electricity bill, from every single activity. Without a way of getting information from the around world or from an interpreter, the person will become totally isolated, their experiences will be reduced and will not be able to participate in any rehabilitation process.

IDENTIFY SPECIAL NEEDS OF THOSE BECOMING DEAFBLIND AFTER ACQUIRING LANGUAGE

When we talked about acquired deafblindness it is a group of people that can be:

•     Persons born with normal hearing and sight
  
•     Congenital deaf or hard of hearing persons with acquired vision problems
  
•     Congenital blind or visually impaired persons with acquired auditory problems
  

There are groups of people with very different backgrounds and complex set of problems.

There is a big difference between a person that acquires deafblindness once and whom has a syndrome or a disease that will deteriorate his-her vision and hearing. Not just in the time issue, but also in the emotional impact that this sudden situation implicates. There is a need of emotional support and time for the person to adjust him or her self to the new life, as well as the family and friends.

The emotional shock that the person who has become deafblind feels is the lack of contact with the world. Always there has to be a way to make contact with him or her. To let him-her know that there is a way of adapting his or her "old" communication system or to find a new way to develop one, to be in contact with each other.

Acquired deafblind friends and pupils have informed me it was important to feel that, even with this difficult situation, they were able to continue in contact with a closer relative, by using new communication methods

The needs of the acquired deafblind persons are basic focus on the rehabilitation and support, both focus on maintaining independence.

"With regard to rehabilitation, the activities that are important are learning new communication skills, training for mobility, psychosocial help and all daily living skills. With regard to support services we must think about services like interpreting services, guide/ help services and volunteers. (Anneke Balder, 2001)

This can be a situation in which the person acquires deafblindness, however still having a functional visual and residual hearing (Usher type 2) for some time. In the case where the person uses the vision and hearing sense, there is no necessity to change the communication system or adapt to the environment. Maybe technical devises will be needed such as hearing aids.

Here the needs are basically emotional to understand the new condition, until s/he loses one of the senses.

I will cover the following aspects:

•     Communication
  
•     Psychological aspects
  
•     Other as daily living skills, braille, O&M
  

COMMUNICATION:

In cases in which the person lost totally the distance senses: vision or hearing the first need is the adaptation of the communication system.

To think in the adaptation of the communication, we need to have information about the background of the person that becomes deafblind.

•     Was the person deaf, blind or with normal sight and hearing?
  
•     What is his-her educational level?
  
•     What work did h/she do before?, is the family supporting him or her in the new situation?,
  
•     How much does s/he know about the condition?
  

The needs will be very different in each case, consider the following situations as:

- If the person was deaf and become blind or deafblind, he or she belongs to the deaf community, he or she should know sign language and finger spelling. The main need of the person is to adapt his-her visual communication system used before (sign language and finger spelling) to a tactual form.

Then with a communication system, he or she will be able to learn how to move independent with O&M , learn braille, depending how much language the person has as well as his or her needs and other daily living skills that need adaptation.

There are certain aspects to take to account:

•     That they need time to understand and accept the new way to use it and the emotional aspects of not using his-her vision again.
  
•     How much the family will be involved in using the communication system with the deafblind person.
  
•     If the deafblind person has a deteriorating disease, during the life the communication method will change and the needs as well as the emotional aspect of the person and the family will be need to adapt to the new situation that he-she will experience.
  

- If the person is hard of hearing and become blind, he or she should still be using his or her residual hearing to communicate and continue with the expression that was used before: speech, sign language, etc. The special need become focus on learning braille, orientation and mobility and daily living skills, that will be explained later on.

- If the person was blind before becoming deaf and knows braille, the need will be to adapt this braille to a communication system in a tactile form, with the Tele-touch machine, or "writing braille" in his-her fingers, dividing the parts of the finger as the braille cells. Using it to write on the persons hand. Or with two hands, using the fingers as the Perkins braille machine keys. Because of his or her blindness, the person will know how to move independently as well as in the daily living skills.

- If the person is literate and was using his-her hearing and vision before and become totally deafblind, the way to cover his or her need in the communication aspect will be to use the block alphabet letters on the hand.

As the situation with the deaf or the hard of hearing, this person will need to learn braille, orientation and mobility and other daily living skills.

- If the person is illiterate and was using his-her hearing and vision before and becomes totally deafblind, then objects of reference, that represent an activity, will be my recommendation as a communication method. It will be difficult but not impossible to learn braille. Have to take into account what are his or her activities to be adapted using the objects of reference. It is necessary that s/he will have basic notions of spatial concepts to teach orientation and mobility. I know that this will be a very strange case, however it can happen.

When a selected a communication method is functional, it is possible to start to cover the other needs of the person. However again you have to have in mind what are the life style conditions of the person, it is not the same situation if the person is a professional on that if s/he is a farmer.

PSYCHOLOGICAL ASPECTS:

Generally speaking the psychological situation of an acquired deafblind person is:

"When deafblindness is an acquired condition, the person will suffer emotional crisis that limits the adaptation process and that affect the perception of the world.

The life style conditions of the acquired deafblind person changes as soon as the person becomes deafblind, the sense of life changes, the hopeless, the perception of the world, and their own identity; that modify the persons stability and his-her emotional wellness. The person starts a psychological duel. (Gutierrez, Laura)

"This new condition makes them adapt to practical and psychological situations that require an instant and painful adaptation and make the person defend him- herself from it.

One way to see the steps of the duel can be:

•     Disturbance
  
•     Non acceptance
  
•     Depression
  
•     Anxiety, afraid, horror, guilty, thinks in suicide
  
•     Shamed
  
•     Acceptance
  

The disturbance is the first reaction, the person can not react in a realistic way.

The non-acceptance is the negatives to accept the situation

The depression come when the condition is assimilated and experiencing the hopelessness of the change.

Generally speaking the support to cover the psychological needs is to work on mental health or emotional well being, these allow the person to live actively and positively in society. Individuals with this condition communicate and adapt to different situations, learn to value him or herself and others, express his or her feelings and emotions, live happy and want to learn.

Recommendations for a good mental health:

•     Self-esteem: is ones own concept, the knowledge that a person has of him-her self; it lets you know your capacities and limitations; defects and positive aspects. The value that an individual has about the potentialities, abilities and personality.
  
  
•     Take decisions in different situations, assuming the consequences. To do it you have to:
  1. Identify the problem
  2. Analysis the problem (Causes, consequences)
  3. Study the options (possible solutions and consequences)
  4. Select the more convenient one

•     The ability to analyse yourself and recognise your limitations and capacities.

OTHER ASPECTS:

--- Access to read and write information in Braille:

If the person was deaf, hard of hearing or with normal sight and hearing, and has a language structure before becoming deafblind, s/he should learn braille to be able to be independent, to get written information from the computer, from books, from other resources as well.

All will depend on the level of language and the needs, because it can be that the deaf or hard of hearing person does not have a language structure, just a sign language structure.

To learn braille there are technical professionals that can teach him or her based on the communication system used by the deafblind person before. You need to realise that each braille letter is a combination of points positioned in different cells, as a 1, b-12, c- 1-4, etc. If the person learns braille s/he will be able to use the computer trough display braille.

--- Orientation and Mobility:

One of the most important issues in the rehabilitation of the deafblind person, is to learn to move independently, for that a specialist teacher is recommended.

To learn orientation and mobility, the person needs to have the communication system to be able to understand how to move safely, to use the cane, to pass obstacles.

If the person does have residual hearing the learning process should be through hearing, supported by an amplification system.

If the person is totally deaf, the instruction to learn should be tactile.

"If the deaf-blind child can learn to organise his immediate environment in a meaningful way, and travel unaided in his home, his classroom, and residential centre, then his life will be freer. (Webster Richard, Orientation and mobility training for the deaf-blind)

--- Daily living skills:

This part of the independence process that was learned when we were infants, how to eat, dress, wash or use the toilet, we do not have to be forget them for the new life style conditions. However, it can be that for the emotional shock the person "forgets" how to be independent in these aspects. In this case the rehabilitation process starts with a memory process of the actions.

There are new ways to develop these activities and they are the rehabilitation points.

To use the bath the person will just need a visual description of the bath.

To eat the person will need to know what is served and where each food is located in the dish. To let him-her know it is traditional, is a "clock description" concerning the main hours: 12- 3- 6- 9 and the spatial localisation of the glass, the utensils (fork, spoon, and knife).

They need to remember the "social rules" and be conscious of the personal presentation.

For dressing the first recommendation is to have a lot of order in his-her personal things. This way they can develop indepence to combine plain colours. One of the most difficult points is to combine the colours and design of the cloths, for that they need the help of an intervenor or relatives. The person can learn the colour and the design and make a tactile mark on the cloth.

There are certain activities as washing cloths that can be done if the machine has the information in braille, as well to use the stove or the oven.

CASE STUDIES:

Catalina was 11 years old when she got meningitis and become totally deafblind teenager. She learned, first of all a communication system based in the written capital letters.

Catalina put her hand on the interpreter's hand and received the information this way. After she attended a school for deafblind children and in it she learned braille, orientation and mobility, to use abacus. Also she participated in some handcrafts workshops in which she learned to colour white ceramics, to make candles, chocolates and recycle paper. She was ready to be integrated again to the typical school, before she passed away.

Beatriz has Usher syndrome type II, she is hard of hearing and has been using hearing aids to attend the school and university. At the age of thirty something she started loosing her vision. Actually she uses her hearing aids and communicates through speech, and learns to use her tunnel vision with some sunglasses when she needs. There are no changes in her regular life. She is the president of the association of deafblind in her country.

Jose becomes legally blind at the age of five from an accident, using his residual vision until more or less when he was 30 years old. He took medication that damaged and his ears and become totally deaf. He become a totally deafblind person, lost his job and sometime after become a salesman, arranged his life again, remarried, had a child and a regular life. He did not want to learn braille and uses the guide-interpreter to move around unknown places. He is the president of the association of deafblind in his country.

Sonia lost her vision and hearing from an accident, when she was a child. She learned braille and finished her school and went to university and got two titles As an educational psychologist, professional guide and rehabilitation psychologist. She works for the government in a school and is the head master of a school for deafblind multiple disabled children and the president of the association of deafblind in her country.

BIBLIOGRAPHY

Teaching Children who are deafblind: contact, communication and learning Aitken Stuart and others David Fulton Publishers Ltd London 2000

Orientation and mobility training for the deaf-blind Webster Richard Katan Publications, 1979

La educaci˘n del ciego The hand book for the blind Bindt Juliet Editorial James Barcelona, 1957

Communication Inservice Deafblind program Walsh D 1995

Teaching children who are deafblind, contact, communication and learning Aitken Stuart and others David Fulton Publishers London, 2000

Aspects of acquired deafblindness Anneke Balder DbI Review January- June 2001

Psychological aspects of deafblindness Gutierrez, Laura No edited document Bogota

Sue¤o Evans Communication Sense course in Bolivia No edited document

VIDEOS:

Vivir sin vista ni oido ONCE Spain

Towards employment deafblind & multisensory impaired people Horizons Lega del Filo D'oro Italy

Contact persons for the deafblind Information Centre for acquired deafblind Denmark