APASCIDE  - ASOCIACIÓN ESPAÑOLA DE PADRES DE SORDOCIEGOS DE ESPAÑAAPASCIDE

Introduction

This document was born with the aim of being a guide and a link for parents, families, friends and professionals who love and work with and for the deafblind persons.

This is a paper work and, as such, incomplete and in constant construction. The index will be the only page evenly maintained in multi-language. If you need some translation, you can send an e-mail to the webmaster indicating in the subject "[APASCIDE] ....." (without the quotation marks) and in the body of the message the specific need (document, literal part, ...).

Ricard lópez Webmaster                 Dolores Romero                   Redacción 

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What is deafblindness ?.

What it is ?
It is a multisensorial handicap that prevents the person to manage by the senses of hearing and sight. Not necessarily there is a total lost of the both senses. The group of total deafblind people is small, it approximately accounts for 5 to 10 % of the total of deafblind people, so that most of the deafblind have some auditive and/or visual residua.

How many cases there are ?
Though the number of deafblind persons registered by ONCE is 1100, it is supposed that there are much more. If we consider the proportion of 15 persons by each 100.000 inhabitants, as it has been calculated in other western countries, the figure of cases for Spain is among 4000 and 5000. Of these, a 20% can be the congenital cases.

Barriers and Insertion in the community.
One of the factors that hinder the integration in the community of the deafblind persons is communication. The deafblind persons have to communicate throughout tact. Deafblindness, as a disability, places a lot of barriers, not only sensorial, but also because of mobility.

How to communicate ?
Deafblind persons can use different communication systems:

  1. Alphabetical Methods:
    • Finger spelling.
    • Block letters.
    • Communicating boards.
    • Braille.
    • Typewriting devices in braille.
  2. Not alphabetical Methods (signs or symbols):
    • Sign Language.
    • Simbols.
    • Speechreading. Tadoma.
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What types are there?.

Classification according to the causes of deafblindness:
  1. congenital deafblindness: When the deafblindness appears before developing the speech. Among the most common are the viral infections of the mother during pregnancy as, for example, rubella, meningitis, toxoplasmosis, ... and in preterm delivery. Rubella acts on the fetus, and can originate serious damages on it, mainly during the first months of gestation.
  2. acquired deafblindness: The main cause is the Usher syndrome. It is a hereditary reccesive disease. It is necessary that all the two parents carry the disease in their.
    There are three types of known Usher's syndromes:
    • Type 1: They are born with profound deafness. The visual impairements appear between 8 and 12 years.
    • Type 2: Persons with an auditive loss between moderate and severe from birth, and with visual difficulties in the adolescence.
    • Type 3: It is more uncommon. They suffer from visual alterations and progressive deafness in youths who in their childhood seemed to hear and to see well.
    In all the three groups the loss of vision is because of "Retinitis pigmentosa ".

Classification according to the deafblind persons:

  1. Congenital: They are those who become deafblind before the acquisition of the language. It is indispensable to start an appropriate education as early as possible, as otherwise it is impossible to learn at all. They can't reach to imitate what their parents or their older mates do, nor to explore their environment by themselves, and these are the two cornerstones of the learning process during the first years of the life.
  2. Congenital deaf people that lose the sight years afterwards, when they are adults. The most common cause is the Usher's syndrome.
  3. Blind people that lose the hearing when they are adult.
  4. Late deafblind:: They are persons that become deafblind after the acquisition of the language.
One of the main differences among the four groups is the language. While group 1 and 2 use to develop the sign language, groups 3 and 4 generally are continue expressing with the speech, while they receive the information with sign language, or with fingerspelling, or with systems based on Braille. Later appears this handicap, easier will be the education.

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WHAT CAN BE DONE ?.

We believe that the deafblindness is not the deafness and blindness sum or inversely, but constitutes a unique category that requires specific services. The loss of auditive and visual information faces to the deafblind person to serious problems of communication and of mobility and limits intellectual, emotional and social opportunities. To change, to improve the life conditions of the deafblind persons, offering them the opportunities that need to learn communication methods and to developed abilities in their environment; in a word, to obtain the maximum development of all their intellectual potential, human and social: this an enterprise in which the community agents must be implicated:
  • The public institutions as the last responsibles.
  • The not governmental and charity organizations.
  • The deafblind persons and their families, taking awareness of their rights.
  • The society in general
Consequently, we invite you to join us in a " deafblindness project", with objectives as:
  • To establish a support structure to the world of the deafblindness to which one could appeal, put in touch, request information, request support, celebrate meetings or periodical activities, both local or nationwide.
  • To suppress all that hinder the social and cultural development in conditions of equality.
  • To promote and support the training of as many "intervenors" and "contact persons" as necessary. These are professionals that make possible the communication between a deafblind and its environment.
  • Development of residential, occupational and employment, solutions.
  • Solutions to the legislation problems as legal representation and responsibility matter of the handicapped, as much within the family as outside of it.
Your opinions and your support are invaluable. Only by working together we can identify and solve the current problems and prepare the future. Only by working together can give us a present and a future. With this aim, we propose you to fill-in the enclosed form and send us it back by e-mail. In short we will be in touch with you.

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II CONFERENCIA NACIONAL DE PADRES DE NIÑOS Y JOVENES SORDOCIEGOS.

LUGAR: Madrid 1,2 y 3 de Noviembre del 1996.
ABSTRACTS DE LAS CONFERENCIAS: Ricard López.
  1. Atención precoz. Samia Robin. CESSA (Francia).
  2. Atención precoz. Ana G. Molina Riazuelo. MAEPS / CRE "Antonio Vicente Mosquete" (ONCE).
  3. La educación del niño sordociego. Ger Van Rijn. Stichting Instituut Voor Doven (Holanda).
  4. La educación del niño sordociego. Pilar Gómez Viñas / Teresa Tejero Álvarez. MAEPS / CRE "Antonio Vicente Mosquete" (ONCE).
  5. Oportunidades laborales. Jean Françoise Guerineau. Cat de la Chaume (Francia).
  6. Oportunidades laborales. Manuel Oliver Breto. D.G. ONCE.
  7. Residencia. Massimo d’Amico. Lega del Filo D’oro (Itàlia).
  8. Residencia. Carlos Guerrero. Residència "Los Pueyos" (Aragón).
  9. Atención a Padres. Ana Mª Mascarade Fontecha. D.G. ONCE.
  10. Implantes coclears. Manuel Manrique /Alícia Huarte. Clínica Universitària de Navarra.
  11. Últimos avances en ajudas para baja visión. Mª José Sánchez Castro. Instituto Oftalmológico de Alicante.