Dbi review issue Number 45 • January – June 2010



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New steps forward with Francophone Africa

Larry Campbell, President, ICEV

As most of you will know the French speaking countries of Africa are often overlooked in our development work because so many of us, myself included, lack the language capacity to be effectively engaged in those countries.

ICEVI’s Global Campaign on Education for All Children with Visual Impairment (EFA-VI) has been very concerned about this matter.

Therefore, it was a great pleasure in January of this year to welcome the Francophone Blind Union (FBU) as an International Partner Member of ICEVI.

This development has made a significant difference in raising the profile of EFA-VI within Francophone African countries. Not only does FBU now have a seat on the Executive Committee of ICEVI but they have become very actively engaged in promoting the program. Materials related to the Global Campaign have been translated into French and distributed to FBU members and they are helping ICEVI to get the program underway in Francophone Africa.

Francoise Madray-Lesigne, President of FBU and her colleague Andre Kowalsky from the Paris headquarters of FBU have already made two planning visits to Burkina Faso which has been selected as the first Francophone Africa country to become actively engaged in the EFA-VI program. Successful meetings have been undertaken with the Ministry of Education, UNICEF, the French and American Ambassadors and a number of international NGO’s working with the country.

The Burkina Faso EFA-VI National Task Force will be convened in September with the support of the wife of President Campaore. ICEVI and FBU hope to have the program underway in early 2011 shortly after the scheduled national elections in November. Discussions with the government and non-government sectors have established a preliminary target of reaching 1,000 visually impaired children in the first three years of operation.

As I prepare this contribution for Dbi Review I have just returned from the quadrennial meeting of the Francophone Blind Union in Montreal where I had the opportunity to introduced EFA-VI Global Campaign to representatives of more than fourteen French speaking countries. Unfortunately, because of problems in securing Canadian visas, only about half of the delegates from the Africa region were able to participate.

However, there was a positive energy among the delegates who were in Montreal from Burkina Faso, Cameroon, Mauritius, Madagascar, Morocco, Mauritania, Senegal and Tunisia which I read as a good sign for the future of the EFA-VI program throughout Francophone Africa.


Networking in Brazil – where unity means strength!




Introducing the 2011 DbI World Conference hosts: Grupo Brasil and Adefav

Stan Munroe reports that: Brazil was awarded the opportunity to host the 2011 World Conference of Deafblind International at the DbI European Conference in Senigallia, Italy in September, 2009. As an opportunity to tell the DbI community about the great progress being made in Brazil, the hosts were asked to provide a sketch of the deafblindness related programming throughout this vast country. The article is about networking in Brazil, and demonstrates how this process is so successful in Brazil.


GRUPO BRASIL (Group of Support to the Deafblind and Multiple Sensory Impaired)

The national network Grupo Brasil works collaboratively towards change in the Brazilian perspective concerning the education and services for people who are deafblind and multiple sensory impaired. Grupo Brasil comprises the organizations: AHIMSA, the educational organization in São Paulo; ABRAPASCEM, the family association and ABRASC, the organization representing individuals who are deafblind and many others, including government and non-government organizations.



Shirley Rodrigues Maia, the Chair of Grupo Brazil reports that:


the education of people who are deafblind started in Brazil after Nice Saraiva Tonhozi took a course at the Perkins School for the Blind in 1967. Following her education at Perkins, Nice Saraiva Tonhozi set out on a journey to champion the education of people with deafblindness in Brazil. She created the first school in Brazil and in Latin America for this population, in the city of São Caetano do Sul, naming it the Anne Sullivan School.

From that milestone in 1967 through the 1970’s there were periodical openings and closing of the school due to political problems during that time. The 1980’s witnessed more stability with that program. Children with multiple disabilities were accepted to take part in their program. A parents group was formed at the School; for until then, parents did not get together to discuss their problems, support each other or look for their rights.

Furthermore there began an increase in services for people with deafblindness people in other parts of Brazil. In São Paulo in 1983, ADefAV, a Resource Center for multiple disabilities, deafblindness and visual impairment was formed. Then in 1991 Ahimsa was founded to expand upon the services in São Paulo first started by ADEFAV.

Another positive development was the arrival of the Hilton Perkins Program (now Perkins International) working in Latin America to train and develop professionals to establish more services for people who are deafblind throughout the Region. Hilton Perkins also invested in an Association of Parents, offering a course to empower parents to become leaders. An important part of this development happened in 1995 when the IAEDB World Conference came to in Cordoba, Argentina, the first time the world conference was held in Latin America.

An important step for Brazil occurred in 1997 with the creation of the network Grupo Brasil to support the deafblind and multiple sensory impaired. With this network began the establishment of programs and action plans aimed at improving public policies for people with deafblindness and multiple impairments. This new network allowed for partnership work to be done at a distance with families, professionals and people with deafblindness.

Projects of this network included the creation of a data bank of people with deafblindness and multiple disabilities, the completion of a list of deafblindness related bibliography references and the development of a website.

Currently, Grupo Brasil promotes leisure and recreation activities with parents and people with congenital deafblindess; organizes fieldtrips and other interactions among people with acquired deafblindness – all in partnership with ABRAPASCEM and ABRASC, respectively.

Grupo Brasil has members in almost all Brazilian States. It organizes national regional, state and city Meetings; seminars; international meetings and forums for professionals, parents and people with deafblindness. Grupo Brasil has the goal to disseminate information, and for this, in addition to the website, publishes guidelines, leaflets and books on deafblindness and multiple sensory impairment.

The following is a listing of the main results from Grupo Brasil’s actions:

• The Brazilian Ministry for Education acknowledges deafblindness as a unique disability.

• A number of major National Meetings and Internationals Forums were held in recent years. These were organized with the support from such international organizations as Sense International – Latin America (UK), Perkins International (USA), CBM (Germany), Canada International Development Agency; and from such Brazilian governmental agencies as the National Secretary of Special Education, the National Secretary of Education (Ministry for Education), CORDE Coordinator of the Person with Disability (Ministry for Justice) and City and State Educational Secretaries from several regions of the country.

• The Brazilian Ministry of Work and Occupations have created the positions of Teacher for the Deafblind and Professional Guide-Interpreter.

• The Ministry for Education has created a sector to provide services to people who are deafblind with multiple impairments within the Center to Support the Deaf (CAS) and the Center to Support the Blind (CAP).

• There is now a city and state law declaring the ‘Day of the Person with Deafblindness’ in São Paulo, celebrated on the last Sunday each November. Actions are being taken to have this celebrated in more cities and states throughout Brazil.

• Deafblind International awarded Grupo Brasil the privilege to host the XV World Conference on Deafblindness. The conference will take place in São Paulo, Brazil, 27 September through October 01, 2011.

AHIMSA – Educational Association for Multiple Impairment

Shirley Rodrigues Maia also reports that:


Ahimsa was created on March 04, 1991 to provide educational services to people with deafblindness and multiple impairment. This educational facility supports a number of programs in the city of São Paulo as follows:

The program G.A.I. (Children Service Group) focuses on early intervention and preschool programs for children between 0 and 6 years old. The goal of the program is to fully develop the child’s social inclusion. The process involves ensuring that mothers or primary caregivers participate, together with the child and the teacher, to receive orientation on how to communicate, organize routines to develop opportunities for communication, orientation and mobility techniques geared towards improving the child’s autonomy and independence.

This program emphases expressive communication – how children express their emotions, thoughts and feelings and receptive communication – how the children receive information from the environment and from other people. The program places emphasis on developing consistent routines, which encourages the individual to anticipate facts, to understand what is going on around them and to motivate communication.

The program Functional I provides educational services for children between 7 and 10 years of age. In this program, the children already have a communication system established which allows them better social interaction in a group, and better able to explore all environments and contexts where they participate.

The program Functional II provides educational services for teenagers between 10 _ and 14 years of age. In this program they start transition to adult life, with activities more drawn to the community around the school; providing orientation to parents to seek vocational and professional activities in the community where they live.

Within these two later programs there is the Fênix Project, which is aimed at children over 10 years of age who have never received any service before. With this project, the mother or primary caregiver must also participate to receive orientation and support.

In addition to these programs, Ahimsa also offers Pedagogic Support services to students enrolled in public schools and universities.

The Transition program is an Ahimsa partnership with Grupo Brasil, and is aimed at improving the quality of life and active participation in society for people between 16 and 26 years old by promoting their inclusion in the job market. Furthermore, Ahimsa and Grupo Brasil partner in a joint rehabilitation program for people with acquired deafblindness and those with acquired multiple impairments.

Ahimsa is also a Resource Center that offers a wide range of services, including: courses and training to teachers in public schools, either in person or through distance courses; videoconferencing and online classes; translation services; distribution of materials on deafblindness and multiple impairment through the Ahimsa website and distribution of CDs during the courses and lectures. Ahimsa supports the inclusion of people with deafblindness through partnerships with City and State Secretaries of Education and the Brazilian Ministry for Education.


ABRAPASCEM – Brazilian Association of Parents and Friends of the Deafblind and Multiple Sensory Impaired

Márcia Maurílio Sousa and Susana Aráoz report:


that the mission of ABRAPASCEM is to organize, support and give guidance to parents and other family members of individuals with deafblindness in Brazil to improve their quality of life, through developing solidarity in an atmosphere of togetherness among the members.

ABRAPASCEM was founded by 20 families from different Brazilian states in 1999.

Some of these families have stood for ‘the cause’ for more than 20 years at the schools and institutions where their children were enrolled.

Today there are about 350 families associated with the organization from all over Brazil. These families get together periodically to discuss issues related to the community where they live. They look for solutions through better public policies at their local governments to ensure the rights of those citizens who are deafblind and multiple impaired in areas of health, education, leisure and vocational services.

There are ABRAPASCEM groups in the states of São Paulo, Minas Gerais, Rio de Janeiro in the Southeast; in the states of Paraná, Rio Grande do Sul and Santa Catarina in the South; in the Northeast states of Bahia and Sergipe; in the Center-West states of Mato Grosso do Sul and the Federal State Brasília/DF and the states of Rondônia and Acre in the North.

ABRAPASCEM is a partner with Grupo Brasil in such projects as: ‘Project Adding Up’ – Leisure and Recreation and ‘Project Being’ – a Professional and Vocational workshop for people who are deafblind and their families.

During these past 20 years of activity, ABRAPASCEM has organized five National Meetings and several Regional meetings. Members of the Executive Board and Financial Council have participated in International Meetings and projects with Family Associations throughout Latin America.

Members also take part in the Council of the Rights of the Persons with Disabilities at city and state levels. Currently, the various Regional members and the Board of Directors are heavily involved to ensure the inclusion in the school systems of children and young adults with deafblindness and multiple impairment. This activity is supported by Perkins International and the Lavelle Project.



ABRASC – Brazilian Association of the Deafblind

Carlos Jorge Rodrigues and Claudia Sofia Pereira report:


that the motivation for the founding of ABRASC, began following a meeting of people who were deafblind during the 4th Seminar of POSCAL, in Equador in 1998. Cláudia Sofia, who had been appointed as the leader from Brazil, together with other participants from meeting, decided to found ABRASC following their return.

At first it was very difficult to re-unite these people who met each other at that meeting, due to their lack of financial resources, and without any accompanying person or guide-interpreters available to travel together. After much search and mail exchange among those who knew how to read Braille, it was possible to find other people who were deafblind to become the first Board of ABRASC.

Now ABRASC has become legally registered in Brazil and is known widely in several parts of the country through the media, meetings and conferences. With the support of Grupo Brasil, three National Meetings of ABRASC have been organized involving the participation of people who are deafblind, their guide-interpreters, family members, professionals and others from their community.

ABRASC organizes courses to prepare guide-interpreters. Currently it has a project with the State Secretary of Education of São Paulo to prepare guide-interpreters to work at the public schools where young people with deafblindness are educated.

The goal of ABRASC is help improve the quality of life of all people with deafblindness in Brazil, by giving them the opportunity to develop personally, get together with their peers and, overall, to enable this population to participate in Brazilian society with the same rights and duties of any citizen of the country.

A major accomplishment of ABRASC happened in 2003 when the Yolanda de Rodriguez Day Center was opened in São Paulo to develop professional and vocational workshops. Other workshops are also available including cultural workshops, dance, capoeira (Brazilian type of martial arts), theater, art, and various sports and leisure activities such as adapted scuba diving, domino games and playing cards, etc.

The Bikeride for the Liberty of the Senses is an annual ABRASC event that takes place on the last Sunday of June of each year to celebrate Helen Keller International Week.

ABRASC motivates the members to continue standing for the recognition of deafblindness as a unique disability on a national level. Furthermore, it advocates for the recognition of Guide-Interpreters as a professional job category. Members increasingly take part in City and State Councils and are now seeking a Chair at CONADE (National Council of the Disabled) to ensure that public policies are enforced and people who are deafblind are respected.



ADEFAV

Maria Aparecida Cormedi reports on another organization in Brazil called ADEFAV, a Resource Center on multiple disabilities, deafblindness and visual impairment


ADefAV was founded 27 years ago by parents of children with deafblindness, professionals and volunteers with the goal to provide service for these children.

In the search for technical resources, ADefAV formalized, in 1991, their main international partnership with the Hilton Perkins Program (Latin America), Perkins School for the Blind, Watertown, Massachusetts, USA.

During the 1990’s, in addition to children with deafblindness, Adefav started to provide services to children with multiple disabilities as well as for young adults and adults.

In 2000, Software AG, from Germany funded the construction of a building of 2000 m_ (square meters), which was totally planned to meet the accessibility needs of the people with deafblindness and those with multiple disabilities.

Currently Adefav is a resource center for children, youth and adults (and their families) with multiple disabilities, deafblindness and visual Impairment.

The service objectives of Adefav are as follows:

• Encourage and support educational and social inclusion.

• Provide specialized educational services.

• Provide diagnostic services, referrals, assessment and intervention.

• Offer services of habilitation and rehabilitation.

• Provide staff professional development.

• Empower families and professionals.

• Disseminate knowledge in the areas of deafblindness and multiple disabilities.

Adefav’s areas of service and intervention includes: diagnostic evaluation and functional assessment; early intervention; specialized educational services; transition to adult life; vocational guidance and daily life training for adults; therapeutic care; advocacy for educational and social inclusion; training courses; providing information to families (about laws, rights, policies and organization) and the dissemination of information about all the areas indicated.

It should be further pointed out that Adefav’s influence and services are offered not only in São Paulo but in other states throughout Brazil.

Part of AdeFav’s commitment to networking is that it works closely with other organizations mentioned previously to promote educational and social inclusion. Furthermore, Adefav is networking closely with Grupo Brasil to host the the XV World Conference on Deafblindness which will take place in São Paulo, Brazil, 27 September through October 01, 2011.




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