Number 54 • January 2015

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St. Francis Foundation (Stiftung St. Franziskus) hosts International Congress ‘Deafblind Education Meets Medicine’

The size of the population of people with deafblindness should not determine the amount of effort expended on improving quality of life outcomes.

More than 180 national and international professionals, including speakers from five countries, gathered at the St. Francis Foundation (Stiftung St. Franziskus)1 in Heiligenbronn, Germany. Over September 19 and 20, 2014, these representatives from the field of deafblind education examined multiple perspectives, including medical considerations, through lectures and workshops.

In opening the conference, Foundation Director Hubert Bernard quoted Helen Keller: “Blindness separates us from things, deafness from people”. In her honor, participants released balloons bearing inspirational sayings into a bright blue sky. The gathering was enriched by an appearance by the Heiligenbronn School’s band, ‘No Guggies’, who thrilled the audience with their performance of the song “Only For You” from the Wise Guys2.

The foundation has been developing and expanding its offerings for people with deafblindness and dual sensory impairment in an effort to become a center of excellence in the field. The final meeting of the European Union project ‘PropäK’ was expanded to include the international congress “Deafblind Education Meets Medicine”, which was co-sponsored by the Epilepsy Center in Kehl-Kork, Germany4. Consequently, additional professionals and representatives of government ministries and agencies were also in attendance.

The Minister of Social Affairs from Baden-Württemberg, Katrin Altpeter, sponsored the Congress. Verena Bentele, the new federal Disabilities Commissioner also greeted the participants. Assistant Director of the Ministry of Social Affairs, Petra Clauss recognized in her welcoming address to the Congress: “We are paying close attention to the interdisciplinary exchange that is being cultivated here.” Related to the current government coalition agreement in Berlin and discussions about recognizing the category TBL (the German abbreviation for Deafblind) on disability identification cards, she assured the audience that people with deafblindness and dual sensory-impairment, as a specific population, have gained political recognition.

Special education should exclude no one

Dr. Erwin Löhle, professor at the HNO Clinic in Freiburg, Germany4, reported that the issue of deafblindness has been introduced into the political sphere through the efforts of the National Working Group on Deafblindness. Assistant Director Sönke Asmussen from the Baden-Württemberg Ministry of Cultural Affairs defended the approach of special education with the slogan “From Child to Program”. The size of the population of people with deafblindness should not determine the amount of effort expended on education and improving quality of life outcomes. The success of education for children with multiple disabilities and deafblindness cannot be compromised: “Special education should exclude no one.”

Atypical reactions to pain

Dr. Peter Martin, Clinical Director of the Séquin Clinic at the Epilepsy Center in Kehl-Kork, Germany, who has also worked for many years with residents of Heiligenbronn, presented a medical perspective. He discussed the diagnosis of pain in people with severe, multiple disabilities: “Manifestations of pain must be taken seriously; Pain is a warning sign.” He urged greater sensitivity in working with this population, especially because their reactions to pain are not always typical.

Other presentations

The director of the foundation’s deafblind program, Roland Flaig, did a presentation about the Heiligenbronn center of excellence, which serves people throughout the German state of Baden-Württemberg, and the networking project PropäK. Deafblind educator and Coordinator of Deafblind Services at the foundation, Dr. Andrea Wanka , emphasized the importance of relationship-building, shared experiences and openness to emotional exchange in communication in general, but especially with people with multiple disabilities, as seen in CHARGE Syndrome.

Deafblind pastor Peter Hepp from Rottweil, Germany, along with a group of congress participants, led an impactful prayer to St. Patrick using gestures and touch. Ulrike Broy, Director of Deafblind Consulting Services, spoke in her presentation “I see myself speaking” about video analysis as a tool for reflection, and communicative musicality as a method of getting to know a deafblind partner.

Professors Markus Lang and Klaus Sarimski and their colleague Elisa Keesen from the Heidelberg School of Education presented the results of a survey about educational services for children and adolescents with dual sensory impairment (vision and hearing). More than 80% of the cases of deafblindness with severe intellectual impairment had never been diagnosed. The size of this target group is most likely underestimated. The presenters called for greater focus on the issue of deafblind education.

Dr. Johannes Fellinger, Director of the Institute for Neurology of Senses and Language in Linz, Austria, presented evidence that people with dual sensory impairment are often not correctly diagnosed as such. In their social connections, their hand becomes an important tool for relationship building and communication, but one which requires additional time for processing.

The program included eleven workshops that were repeated throughout the congress. Many critical questions about communication and identity were adressed and expanded upon, such as the use of cochlear implants and audiology. In his closing remarks, Foundation Director Michael Wollek declared the congress a success and predicted that the friendly atmosphere of the event would carry over into many other areas of practice.
Ewald Graf, Public Relations, Stiftung St. Franziskus

Translated by Jim Witmer

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