Services for Congenitally Deafblind Adults

Originally published in Deafblind Education, January - June 1993

Note that "The International Association for the Education of Deafblind People" is the original name of Deafblind International

In April, a two day symposium on post-school services for congenitally deafblind adults took place in the United States. A special committee had previously sent a questionnaire on the subject to members of me IAEDB. The results of these have led to the following Mission Statement. The principles it contains should provide a useful starting point for work with congenitally deafblind adults in any country.


Principles

  • The International Association for the Education of Deafblind People (IAEDB) exists, amongst other purposes, to promote an improved quality of life for deafblind people, both children and adults, throughout the world.
  • The IAEDB believes that deafblindness is a unique disability and that within , deafblindness there are distinct groups. Each group requires equal but different approaches for services. The group which is the subject of this paper are congenitally deafblind people, including early adventitiously deafblind people.
  • The IAEDB believes that all deafblind people require additional and specific external support if an improved quality of life is to be achieved.
  • The IAEDB believes that such support for Congenitally Deafblind Adults can only be achieved by an individualised service programme.
  • Such a programme must include services that adhere to the following principles affecting Quality of Life.
  • Quality of Life is improved according to a hierarchy beginning with factors relating to survival, through personal development and social development, to selfactualisation.
  • In each case, the principles are based on Equality of Opportunity and Access.
  • For Survival, this requires Equality of Opportunity and Access to Shelter, Warmth, Food, Clothing, Health Care, Communication, etc.
  • For Personal Development, this requires Equality of Opportunity and Access to family, education, communication, control of one's own life and age-appropriate activities.
  • For Social Development, this requires Equality of Opportunity and Access to a full range of emotional relationships, membership of social groups, work and recreation.
  • For Self-Actualisation, this requires Equality of Opportunity and Access to ongoing education and training, being respected as an individual and a sense of self- worth and confidence through personal creativity at home, work and leisure.
  • When putting these principles into practical effect, it is inevitable that they must recognise the cultural context in which they will operate.


The development of relationships


  • The congenitally deafblind person should have the opportunity to develop self-identity through relationships with family, peers, professionals and others.
  • The development of relationships for the congenitally deafblind person depends also on other people and he/she has the right to support in the continuing development of social and emotional skills.
  • The membership of a congenitally deafblind person's family is the same as that within the local/national cultural definition of family.
  • The relationship between the congenitally deafblind adult and the family should be allowed to evolve as the young person enters adulthood and as both he/she and the family age.
  • There is a responsibility to offer education and continuing support to families in their changing roles.
  • Through interaction, congenitally deafblind people can enrich the lives of others.


Deafblind culture

  • The possibility for congenitally deafblind people to develop in a specific cultural frame is a basic condition for Quality of Life. This cultural frame allows the person to develop individually and to access the common culture of the society in which he/she lives.
  • Opportunities to be creative are necessary for personal development and therefore must be afforded to the individual. Self-identity is a precondition for Quality of Life and for the ability to contribute to the culture. A cultural frame is necessary to support and stimulate creativity and self-identity.
  • Congenitally deafblind people should have access to the common culture and should also have the possibility to create and have access to a culture of their own.
  • Two main dangers, when countries set up a policy for congenitally deafblind people, are excessive centralisation and excessive decentralisation, both of which diminish Quality of Life by impairing individual development and relationships. A wide set of options should be available so that congenitally deafblind people develop contacts which are adapted for accessibility and which offer choice.
  • Deafblind culture is part of the common culture and can contribute to the development of this by producing specific cultural objects (works of art, means of communication, specific cultural events, etc.)
  • Helping common culture to be aware of its own structure by comparison with Deafblind culture
  • providing society as a whole, and non-deafblind people in particular, with experiences and models of relationships which can improve the Quality of Life for human beings.


Nature of Services and Empowerment
1. Professional services to persons with congenital deafblindness should consider

  • the individual person in his/ her right social context in all aspects of life and throughout life
  • that the primary characteristic of all services should be the conscious compensation of the effects of
  • congenital deafblindness on expressiveness and development of self in relation to the world.

2. Adult services exist within a continuum from birth to death and should be realized through

  • early detection
  • individualised early intervention
  • individualised special education
  • individually adapted contexts of social interaction
  • application of principles of special education to facilitate learning through life
  • continual availability of the human resources needed to realize social interaction with the environment
  • personalized general and psychiatric care when necessary
  • continual identification of the individual's capacities and potential and the provision of adapted environmental challenges geared at optimizing personal development
  • continual availability of all kinds of support needed to live as fully as possible as an individual, social and cultural being
  • conscious and continual awareness of the many and varied risks of personal isolation and how to avoid them
  • continual availability of highly qualified multi-professional staff, particularly qualified intervenors.


Procedures for decision-making

  • Decisions concerning life conditions for the individual, and particularly those concerning change or no change in life conditions should be taken in close collaboration between a team of qualified professionals and the family, with close regard to the preferences expressed by the congenitally deafblind person him/herself.
  • A personal advocate should be identified to take on the roll of being the voice for the congenitally deafblind person when he/she is unable to represent his/her own interests.
  • When the congenitally deafblind person, for any reason, is not able to have access to interaction with other people, either through the use of personal intervenors or by him/herself, staff must be prepared to consciously switch between different roles, eg. staff member, friend, peer or others from within the prevailing culture.


Resources
In order to prevent Quality of Life decreasing with age, increasing human and economic resources must be planned for and provided.


Quality Assurance Indicators
The increasing autonomy of the individual will indicate that the effects of Congenital Deafblindness are being adequately compensated for.
During training, during their work, and subsequently, staff must be particularly taught to observe indications of autonomy/lack of autonomy through behaviour. Lack of autonomy or decreasing autonomy will require action involving changes in environmental conditions.