Number 49 • July 2012

Remembering Lex Grandia (1950 – 2012) A message from the President eafblind International was formerly known Das the International Association for the Dear Friends and colleagues, Education of Deafblind People. s I write this introduction DbI Review is published twice yearly, the two Afor our Review I realise editions are dated January and July. what a mixed period we have The editor will be pleased to receive articles, had. We had our Board and news items, letters, notices of books and Management committee information on forthcoming events, such as meetings hosted by Vice conferences and courses, concerning deafblind President Bernadette Kappen children, young adults and older people. in New York this past May. I Photographs are welcome. think both were successful All written material should be in the English meetings and it was great language and may be edited before publication. to see so many people It should be sent for publication to arrive by the date below. attending. We were pleased with the Opinions expressed in articles are those of Lex Grandia. Immediate Past progress on networks. This is the author and should not be understood as President William Green and much of where DbI activity representing the view of DbI. I attended the funeral in takes place so it’s good to see DbI Review is also available on disk. If you are Aalborg on the 28th April. the energy and commitment. interested in receiving your copy in this format, Many people came to pay please contact: We were interested in the their respects and although developing arrangements for DbI Secretariat there was much sadness, as PO Box 143, Burswood the European Conference in you might expect, there was WA 6100, Australia Lille in 2013. Special thanks to also a sense of celebrating Telephone (08) 9473 5422 Valerie Taggiasco for the local Facsimilie (08) 9473 5499 Lex’s life and achievements. planning and Jacques Souriau TTY (08) 9473 5488 I was also recently reminded and his team on the scientific about Mike Collins, a former committee for the content. past president, as the We also had some Latin American Forum on interesting discussions around Deafblindness and Multiple social networking, how we Editor Disabilities hosted the second manage a ‘new world’ and Stan Munroe virtual conference dedicated the ethical issues that may Design to Mike’s memory. I think Geoff Dunn emerge over time. this is a great idea and a Distribution and DbI Membership We are sad to lose cost effective way to share DbI Secretariat our treasurer Ton Groot knowledge, although I don’t DbI Website Zwaaftink who is leaving Stan Munroe and Secretariat expect it to ever really fully Kentalis to take on a more Editorial Office replace all the benefits that senior role as a CEO. We wish CDBA Office, 2652 Morien Hwy, come with personal contact. Port Morien, NS, Canada B1B 1C6 Ton well in his new role and We are all looking forward Tel: 902-737-1453 know that he will remain to the ADBN conference in Fax: 902-737-1114 a friend. However we do Lund, Sweden in November. Email: [email protected] indeed extend our warmest Website: www.deafblindinternational.org The DbI management appreciation to Kentalis who committee will meet just will continue their support before the conference and have appointed Frank Kat allowing a number of us to take over Ton’s role. to participate in the event. Of course the celebrations Cover: Lex Grandia (1950 – 2012) We are delighted that DbI in New York were marred by was able to sponsor some the loss of our dear friend delegates, although we

LAST COPY DATE FOR YOUR NEWS: 12 OCTOBER 2012

2 • DbI Review • July 2012 recognise that we never deafblindness and all the Contents manage to do as much as we commitment that’s shown A message from the President Page 2 would like. every day in lots of different As ever this is an eventful ways. Editorial and Contents Page 3 and busy period of our organization. A continuing Kind Regards Articles thank you to everyone Vice Presidents’ messages Page 4 who works in our field of Gill Morbey Memories of Lex Grandia Page 5 Mélodie’s Song Page 7 Editorial Dynamic assessment of children with deafblindness Page 9 Generating positive interactions Dear friends of DbI, in regular school settings Page 14 s Information Officer of ADbI and editor of DbI A new development (at Kentalis) Page 20 Review, I have the unique Empirical research in the field opportunity to inform you of deafblindness Page 24 about what’s happening in Shelter from the storm Page 45 the world of deafblindness. It gives me immense Yoga: Lead us from darkness pleasure to witness how to light Page 50 much this specialized field pleased to feature an article has advanced in the past Network News Pages 47-49 by Drs Moore and Steer from 40 + years to help improve ADbN, CHARGE, the University of Newcastle the lives of people with Communications, EDbN in Australia relating to this disability throughout inclusion of students with so much of the world. Country News Pages 29-44 deafblindness or multiple While there are so many Australia, Brazil, Canada, China, disabilities in the public exciting things happening Guatemala, Greece,Ireland, school classroom. internationally in this field, Kenya, Romania A must read is ‘Mélodie’s it is often a challenge to song’, a heart warming get reports from people Conferences and announcements story about communication who are doing significant ADBN Preconference on seniors through the gift of music. things. Our website (www. with deafblindness Page 13 This story could have been deafblindinternational.org) 8th DbI European Conference Page 18 right out of Musicophilia and each edition of this – ‘Tales of Music and the The daily life of deafblind people – magazine, including this one, Brain’ by Oliver Sacks (www. Nordic Conference 2012 Page 23 attempts to highlight what is randomhouse.ca). just a sample of stimulating 10th Helen Keller World As usual, this edition programs that are making Conference – First Announcement Page 44 announces various upcoming life better for people with conferences: DbI ADBN deafblindness. DbI News and Membership in Sweden, November In keeping with a popular Membership Page 55 2012, DbI European in Lille initiative from past editions, William Green, past President of DbI Page 56 France, August 2013 and we present again several the World Federation of Secretariat News Page 58 articles of a technical Deafblind Conference in the nature. Two articles are from DbI Board Membership 2011-2015 Page 60 Philippines, November 2013. doctoral students working An interesting conference Membership Information Pages 63-64 under the supervision of Dr. reported by Vula and Shirley Marleen Janssen, who heads from Ahima/Grupo Brasil, up the Congenital Deafblind was the recent Ibero-Latin Communication program at the University of Groningen in the Netherlands. We are (continued on page 55)

July 2012 • DbI Review • 3 SubVice headPresident report

Vice Presidents’ reports Bernadette Kappen reports:

he Strategic Plan people to donate in honor being planned for the fall to has been the driving of someone, creating options put a plan together. At the Tforce for Deafblind for people to use their mobile Board Meeting in May we International. At the May phone to donate, writing had fund raising professionals 2012 Board meeting the proposals for specific projects from Changing Our World members focused on the to organizing marathons. (www.changingourworld. goal related to fundraising. The idea of awareness of com), a company that assists The members were asked to DbI was a constant theme organizations in their efforts dream big and think about throughout the discussions. to raise money, discuss how how additional funds can One idea was to have a we might begin a program. support the work of DbI and day set aside each year for Changing Our World will be especially offer increased deafblind awareness. This invited to the fall meeting to opportunities for members would be helpful in getting assist us with developing the from developing countries. people interested in possibly DbI plan. The Board divided into donating but also help This is a very exciting time small groups and discussed countries promote the needs for DbI. Our success with options to raise money. The of people who are deafblind. fundraising will allow DbI to conversations all focused on The next step will be to grow and reach out to more an increased awareness of write a fundraising plan and people around the world. If deafblindness along with circulate it to the Board for you have ideas on how we possible ways to raise money. comments. Projects will be can move ahead with the Ideas ranged from identifying prioritized and funds sought strategic initiative you can companies that might be for these activities. A meeting contact Stan Munroe and he interested in our mission, with chief executive officers will collect these suggestions. setting up a mechanism for from several organizations is

Carolyn Monaco reports:

ere at DbI our in the development of our Significant progress has vision “to be the 2012 - 2015 strategic plan. been made in “enhancing Hinternational This plan continues to drive our organisational capacity” association which what we do, how we spend through the ongoing promotes the awareness of our money and how we secretariat and information deafblindness as a unique measure our success as an officer functions as well disability and to influence organization. as increased support to for appropriate services for Our strategic plan was the coordination of our deafblind people around reviewed and updated in networks. More specific the world” and our purpose May 2012 at our Board individual membership “to support professionals, meeting in New York and recruitment plans are being families and people who are is available on the website implemented and our efforts deafblind to raise awareness under the tab “About to seek recognition of DbI of deafblindness and to DbI”. As a result of a well with the United Nations support the development defined Strategic Plan continue as well. of services to enable a good we continue to develop a quality of life for deafblind clear path on where we Thank you to everyone children and adults of all want to go and effective involved! ages” were instrumental ways of getting there.

4 • DbI Review • July 2012 Lex Grandia (1950 – 2012)

Memories of Lex Grandia – International Statesman for Deafblindness

he international world of Deafblindness lost a Tspecial friend, colleague and advocate with the passing of Lex Grandia in Norresunby (Aarlborg) Denmark on April 19, 2012. Lex was many things to many people: a theologian, counsellor, husband, father, grandfather, friend, consummate advocate for human rights and a champion of deafblindness. He was a true international figure and established close friendships with so many people around the world through the implications of this convention his Presidency of the World towards improving the quality of Federation of the Deafblind and life for persons with disabilities, long partnership and friendship including his own. During the with members of the Board of conference Lex was awarded the Deafblind International. Distinguished Service Award, an Lex’s legacy will endure for award presented to an individual generations through his engaging who has made a distinguished work at the United Nations to contribution to services for enshrine the human rights for deafblind people on a national and people with deafblindness through international level. Lex’s plenary the UN Convention on the Rights and details about his award also to Ann Thestrup, Lex’s special of Persons with Disabilities. presentation, including photos life partner. Ann was at his side During a plenary session were published in DbI Review, constantly as a wife and as his at the XV DbI Conference on Number 48, January 2012. communication assistant. While Deafblindness in Sao Paulo, Brazil Lex had been appointed on April Lex was a very independent (September 2011), Lex discussed 05 an Officer of Oranje-Nassau by professional, Ann was that the Dutch Queen. This is the 4th competent partner supporting highest order in the Netherlands, and assisting Lex to make his huge Lex’s country of birth; which was contributions to the world of received posthumously. The Order deafblindness. is a Dutch chivalry order open to “everyone who have earned A few Tributes: special merits for society”. See Gill Morbey pays tribute to Lex en.wikipedia.org/wiki/Order_of_ Grandia, President of the World Orange_Nassau. Federation of the Deafblind: The funeral for Lex was held “Lex was one of the most April 28 in Norresunby Denmark significant figures in the world of at Norre Uttrup Kirke followed deafblindness. He worked tirelessly by a memorial ceremony at all his life for our cause and was a Johanneschurch in Utrecht, champion of human rights. Lex’s Netherlands on May 05, 2012. warm and generous personality DbI extends a special tribute touched everyone he met. We will

July 2012 • DbI Review • 5 Lex Grandia (1950 – 2012) all be diminished without him and the world is truly a poorer place without his wisdom, laughter and piano playing.”

We, the WFD President (Colin Allan), WFD Board, WFD Honorary Presidents (Markku Jokkinen and Liisa Kauppinen) and the WFD General Secretariat would like to give our deepest condolences on the passing of Lex Grandia. Lex worked with us all very closely and was one of our strongest and faithful supporters. Together we managed to develop human rights of deaf and deaf- blind people in several ways all over the world. We miss his strong The international movement of For further tributes to Lex, willingness to cooperate and people with disabilities has lost including photos and further support us, his positive attitude, his one of its prominent leaders and details about his life, check warmness and his good sense of activist. The European movement out the memory book (http:// humour.... is therefore very touched and sad memorialwebsites.legacy.com/ by this news. EDF will ensure that lexgrandia/homepage.aspx) which Javier Guemes, on behalf of the we pay tribute to Lex’s legacy by is online until May 04, 2013. European Disablity Forum, says: “I continuing the fight for freedom would like to express our sincere and equal rights condolences to Ann,... the rest of of people with Lex’s family... and our friends and disabilities in colleagues at the World Federation Europe and the of the Deafblind. world.

smelling…

6 • DbI Review • July 2012 Mélodie’s Song

Mélodie’s Song

This is a story about acquiring language against all odds.

Our Family Bad News On February 28, 1995, Mélodie was born under very difficult circumstances. With a pre-natal diagnosis of hydrocephalus and Spina Bifida, we knew that life would pose important challenges to our daughter; but we had not been told how serious her condition really was. In fact, the children’s hospital where she was born had devastating news for us: Mélodie’s case was very rare in its gravity and in the number of conditions. We were told that Mélodie had no visual cortex whatsoever; in fact most of her brain was absent. What little brain tissue she had was compressed into a thin sheet of brain cells in the periphery of her skull because of a huge intracranial cyst that was taking up most of the space. With no cortex she would never see. We were also told that she had absolutely no responses in a Brainstem Evoked Response Audiometry test (BERA). Even with loud noises (90 db) no brain activity could be detected. how could she ever learn to would hear a piece of equipment She would never hear. The many communicate? How could she begin to beep. We had been told professionals around the table at ever derive any pleasure and by the doctors that it was totally the children’s hospital said they satisfaction from life? Would she impossible for Mélodie to hear had not seen this serious a case in have any quality of life at all? anything whatsoever. How could 10 years and that not only was she With all these medical conditions she then startle to sounds? We deaf and blind but that she would could she even survive? The news were told that it must be our most likely be in a permanent was shocking and the best way to imagination or because of the vegetative state. Mélodie had, describe it would be to compare movement of air… we would later learn, more than it to a sudden excruciating jab to At about the same time we 20 serious medical conditions, the stomach, one so strong that it noticed that Mélodie had reactions many of which were profoundly leaves you absolutely breathless. to light that were similar to her debilitating and some of which reactions to sound. She would were even life threatening (e.g. startle to a light being turned No Hearing and No Vision? Cerebral Palsy, Syrinx of the on and seemed to have some upper spine, severe Epilepsy, While Mélodie was still in her first perceptions of objects or people Osteoporosis, Spina Bifida, Arnold days and weeks of life in neonatal near her because she would react Chiari Syndrome, etc.). intensive care, we noticed that to movement. Over time it was With no hearing and no vision she would startle every time she confirmed that in fact Mélodie

July 2012 • DbI Review • 7 Mélodie’s Song had some residual vision, but very How is all this possible given Another important factor is that little. With no cerebral cortex she the diagnosis and devastating Mélodie is surrounded not only by obviously had cortical blindness. prognosis? songs and spoken language, but After the initial shock subsided, also by attention, affection and we decided that we would not The Solution love. She feels secure, comfortable accept the dire prognosis of the The golden rule for us was and happy when she interacts with numerous specialists and that we stimulation. Obviously this applies her family and the staff at school. would do all that we could to give to vision, hearing, language We have noticed that she only our daughter a fighting chance and physical development. Sign speaks and sings when she feels to have the best quality of life language is obviously the best comfortable and happy: she does possible in her circumstances. option for many children. But not speak or sing to strangers. for Mélodie who has no vision, Mélodie’s Amazing Progress possesses strong tactile defences Conclusion Fast forward to 2011! Incredibly and partial paralysis of her arms Although speaking, singing enough sixteen years later, Mélodie and hands, sign language was just and songs are obviously not the has developed spoken language not an option, not even the hand only solutions to bridging the and can actually sing some basic over hand version. Constantly communication gap between the songs with melody and words. exposing Mélodie to spoken deafblind child and significant She has acquired an expressive language was the only solution others, it offers a wonderful vocabulary of approximately we could find and this became our opportunity to interact and share a 50 French words and at least 25 priority. common pleasure: communication expressions or short phrases (e.g. But how do you do that with through the gift of music. Knowing “la fille à Maman”, “brosser les someone who has very little today that music stimulates the dents”, “aller promener”). These functional hearing? The solution brain in amazing ways, namely words and phrases are not all we found was to expose Mélodie the language centre, in retrospect spoken regularly; some are but to songs constantly. She listens it seems a logical choice to have others can be used only a few to songs all night long on her made. We thought at the time times to reappear in the future or MP3 player and small speakers. that with so little brain tissue it not at all. She almost constantly Although the volume is low was essential to stimulate her sings small passages from some of enough that she can still sleep, she neurons to develop functions and her favourite songs and has even listens to the music while sleeping pathways to enable perception been heard singing “Au clair de la and sings when she wakes up. and processing of sounds and lune” completely from beginning She listens to songs all day long as language. The results speak for to end on two occasions, one of well. She does use her MP3 player themselves and we are convinced which was luckily caught on a during the day but Mom, Dad and that constant exposure to songs cell phone video camera. She has her brother sing to her most of enabled our daughter not only to surprisingly good pitch and does the time when she is with them, develop her hearing but also to not sing out of tune. especially when she is being held acquire some spoken language and Amazingly she seems to find it in their arms on the rocking chair. enjoy a quality of life from which much easier to sing than to speak At school the situation is very she would not otherwise benefit. and most of her words are sung similar because the educational With children whose deafness rather than spoken. Most of her staff use songs in abundance. She originates in the brain, there is singing is akin to echolalia and listens to very little instrumental hope that stimulation using songs self-stimulation. However, some of music because early on she showed might be as beneficial to them as it it is clearly used with an intention a clear preference for songs. She was to Mélodie. to communicate ideas, feelings, would actually complain when needs and desires when heard the music was instrumental. She Anne-Marie Ménard and Pierre in context. When that is the case still does! Also, we felt that songs Beaudin small passages or words are sung offered her better language Gatineau, Québec, Canada in ‘sound bites’ to replace spoken stimulation and that was consistent Email: [email protected] language. At other times she opts with the acquisition of language, to speak rather than to sing. which was our primary objective.

8 • DbI Review • July 2012 Dynamic Assessment of Children

Dynamic assessment of children with deafblindness

Assessing Potentials for Learning During Interaction

ssessment is at to learn new skills and to the heart of the give them the opportunity Adevelopment of to show their potential, the a child who is deafblind. assessment should focus Only by understanding a on providing information child’s potentials, abilities about learning processes and needs can one plan an and teaching strategies that educational program that would facilitate learning. provides maximum benefit. This information can only The important question is, be collected by the inclusion “What is the appropriate of the child as well as way to assess children with communication partners in Erika Boers deafblindness?” the assessment, giving them Previously, the assessment opportunities for learning procedures have focused experiences. Dr. Jude are responsible for cognitive on the use of standardized Nicholas did point this out in modifiability, the assessment static tests. The term ‘static’ his plenary presentation at should be dynamic. refers to a test where the the XV DbI Conference and examiner presents items to his article published in last The dynamic the child, and records his or DbI Review (January 2012, assessment model her response without any volume 48): “Learning in the Dynamic assessment is an attempt to intervene in order deafblind child is not intrinsic assessment model that to change, guide, or improve or individualistic but built does take the potential of a the child’s performance. up in interactions with the person into account (i.e. the Often the tests do describe world and people around the ability of a person to learn the child in general terms; child”. Many children fail on new skills). Generally defined, mostly in relation to their static tests because of lack dynamic assessment is “an relative position in their of opportunity for learning interactive, test - intervene - peer group. These tests do experiences. But that does retest model of psychological give us an idea of what not say that they don’t have and psychoeducational the child has learned so the potential to learn. To assessment” (Haywood & far and may describe the provide accurate information Lidz, 2007, p. ix). It links cognitive limitations of a about the child’s learning assessment with intervention, child. However, they are ability, change processes, and enabling examiners to move inadequate in revealing the mediational strategies that child’s cognitive potentials. When assessment is based on utilizing only standardized static tests, there is a high Many children fail on static tests because of lack of risk for not recognizing the “ potential of the child with opportunity for learning experiences. But that does not deafblindness. say that they don’t have the potential to learn To provide insights in the ” deafblind child’s potential

July 2012 • DbI Review • 9 Dynamic Assessment of Children beyond only testing present master a task, in interaction with response to intervention, (b) levels of performance. In contrast a more capable communication determining the amount of to traditional static assessment, partner. The main differences mediation needed to bring the the dynamic assessment model between normative, static person to some specified level includes: (a) two test periods assessment and dynamic of competence, (c) determining instead of testing the person only assessment can be found in Table 1 the extent to which the person one time (the so- called pretest and below (adapted from Haywood & benefits from assistance, and (d) retest), and (b) a teaching phase Lidz, 2007). the identification of inhibiting where the person is supported In the literature on dynamic factors in learning and processes to learn new skills (see figure 1 assessment, different perspectives or means that enable the below). are discernible: (a) determining the individual to learn a new task During the teaching phase the amount of change demonstrated and determination of promising person is offered assistance to by a person on a given task in interventions.

Figure 1 General dynamic assessment model

Pretest Teaching phase Retest

valid and reliable Individual instruction valid and reliable measurement instrument measurement instrument Competent partner behavior

Table 1 Comparison of normative and dynamic assessment approaches

NORMATIVE ASSESSMENT DYNAMIC ASSESSMENT

What is compared? Self with others Self with self

Standardized; the same for Individualized; responsive to person’s The process is: everybody learning obstacles

How much has this person already How does this person learn in new learned? What can he/she do or not situations? do? How, and how much, can learning and The major question is: How does this person’s current level performance be improved? of performance compare with others What are the obstacles to a more optimal of similar demographics? level of competence?

Learning potential: What is possible with Global estimates of ability, for reduced obstacles to learning? example IQ or developmental age. Outcome: How can such obstacles be reduced? Current level of independent functioning. How does the individual function with a more experienced interventionist?

10 • DbI Review • July 2012 Dynamic Assessment of Children

Underlying theory Dynamic assessment with of assessment instruments that The grounding of this model is to persons who are deafblind can be used with persons who are deafblind (i.e. Andersen & be found in the theory of Vygotsky The red thread of dynamic Rødbroe, 2006; Mar & Sall, 1999; (Vygotsky, 1978, p. 86) and assessment is that children might Nelson, van Dijk, McDonnell & Feuerstein’s Mediated Learning perform above the limits of their Thompson, 2002; Rowland, 2004; Experience theory (Feuerstein, initial capabilities when assisted Stillman, 1978; Stillman & Battle, Rand & Hoffman, 1979; Feuerstein, by a more experienced adult in 1985). Instruments as these can Rand, Hoffman & Miller, 1980). harmonious interactions. However, be used for pre- and retesting, Vygotsky assumed that children it is known that communication as well as identifying inhibiting might perform above the limits with persons who are deafblind, and promoting factors. Which of their initial capabilities when especially those who function instrument to use depends on the assisted by a more capable adult. at a prelinguistic level – by focus of the assessment and the The level of cognitive functioning gestures, vocalizations, eye-gaze skills that are assessed. By adding could be determined by the etc. – is challenging, even for (a) exploration of hypotheses Zone of Proximal Development familiar communication partners about improving the person’s (ZPD) which is described as the (Downing, 1993; Holte et al., 2006; skills, (b) teaching the partners difference between the actual Janssen & Rødbroe, 2007). In this new promoting behavior, and level of development (what a case the question raises whether (c) a teaching phase in which child can do without help) and the the competence of the person the person with deafblindness is potential level of development with deafblindness is constrained taught new skills, the instrument (what a child can do with the by his or her capacity to use the can be transformed to a dynamic assistance of a more capable help and support provided by the assessment procedure. person). It indicates the state of communication partner or whether a child’s mental development, it is constrained by the partners’ producing a more comprehensive abilities to provide adequate Research understanding of the functioning assistance to the person during Dynamic assessment procedures of the child, which is insufficiently the assessment. To overcome have been applied to different represented by the zone of this problem it is important that clinical and educational groups, actual development. Feuerstein dynamic assessment procedures for such as children with learning emphasized the quality of the persons who are deafblind include: problems, people with intellectual interaction between child and the identification of partner disabilities and children belonging environment, and developed behaviors that support the person’s to minority groups (Haywood & the theory of Mediated Learning communicative competence, and Lidz, 2007; Lidz & Elliot, 2000; Experience. This concept is defined teaching supporting behavior to Tzuriel, 2000). But little is known as a process in which adults the adult that interacts with the about dynamic assessment interpose themselves between a person during the assessment procedures for persons who set of stimuli and the child and (Boers, Janssen, Minnaert & are deafblind. It is an emerging modify the stimuli for the child. Ruijssenaars, in press). The focus of field that we do need to do The mediated learning experience a dynamic assessment procedure more research. At the University includes several principles, for persons who are congenitally of Groningen and Royal Dutch for example the mediation of deafblind should therefore be Kentalis in the Netherlands, meaning (focusing the child’s threefold: we took the first step by doing attention on what is important 1 Identification of partner research at the development of in a given context and helping behaviors that support the a dynamic assessment procedure the child to understand its value), person’s communicative to assess the ability of a person the mediation of transcendence competence. with congenital deafblindness (bridging concepts and events 2 Positively change the behaviors to learn new interaction and beyond the immediate task and of the communication partner. communication skills. This research inducting abstract ideas), and 3 Assessing the response to the is done under the guidance of the mediation of achievement positively changed partner Professor Marleen Janssen. (helping the child to determine behaviors. Similar research studies on effective strategies to reach the dynamic assessment of cognition goal). through interaction are taking Significant work has already place in the Nordic countries in been done in the development

July 2012 • DbI Review • 11 Dynamic Assessment of Children collaboration with the Nordic assessment offers us is essential for show what they are capable of. Welfare Centre in Denmark (The the following reasons: it supplies For children with deafblindness, Nordic Network on Cognition in the familiar communication dynamic assessment is the way Deafblindness). However, much partners with guidelines on to assess their abilities to learn; more research is needed on this how to interact with the child and, most importantly, to let them important topic for the deafblind with deafblindness to ensure develop, by learning through field. development; it is providing us interaction. Therefore the with information about what appropriate way to assess children The importance of dynamic the child is capable of; and, with deafblindness is to utilize a assessment it is offering the child with dynamic assessment model. deafblindness the opportunity to The information dynamic

References: Haywood, H. C., & Lidz, C. S. Nicholas, J. (2012). Pediatric (2007). Dynamic assessment in rehabilitation: Specific focus Andersen, K. & Rødbroe, I. (2006). practice: Clinical and educational on the needs of children with Identification of congenital applications. New York: deafblindness. DbI Review, 48, deafblindness. Aalborg: The Cambridge University Press. 10-14. Danish resource center on congenital deafblindness. Holte, L., Prickett, J. G., Van Dyk, Rowland, C. (2004). D. C., Olson, R. J., Lubricia, P., Communication matrix. Portland, Boers, E., Janssen, M. J., Minnaert, Knutson, C. L., et al. (2006). Issues OR: Oregon Health and Science A. E. M. G., & Ruijssenaars, A. J. in the evaluation of infants and University. J. M. (in press). The application young children who are suspected of dynamic assessment in people Stillman, R. (Ed.) (1978). The of or who are deafblind. Infants communicating at a prelinguistic Callier-Azusa scale (G). Dallas: & Young Children, 19(3), 213- level: A descriptive review of the Callier Center for Communication 227. literature. International Journal Disorders. Janssen, M., & Rødbroe, I. (2007). of Disability, Development and Stillman, R. & Battle, C. (1985). Communication and congenital Education. Callier-Azusa scale (H): Scales for deafblindness II: Contact Downing, J. E. (1993). the assessment of communicative and social interaction. Sint- Communication intervention abilities. Dallas: Callier Center for Michielsgestel, the Netherlands: for individuals with dual sensory Communication Disorders. VCDBF/Viataal. and intellectual impairments. Tzuriel, D. (2000). Dynamic Lidz, C. S., & Elliot, J. G. (Eds.) In L. Küpper (Ed.), The second assessment of young children: (2000). Dynamic assessment: national symposium on effective Educational and intervention Prevailing models and communication for children and perspectives. Educational applications. New York: Elsevier youth with severe disabilities: Psychology Review, 12(4), 385- Science. Topic papers, reader’s guide & 435. videotape (pp. 109-134). McLean, Mar, H. H. & Sall, N. (1999). Vygotsky, L. S. (1978). Mind in VA: Interstate Research Associates, Dimensions of communication. society: The development of Inc. An instrument to assess the higher psychological processes. communication skills and Feuerstein, R., Rand, Y., & Cambridge, MA: Harvard behaviors of individuals with Hoffman, M. B. (1979). The University Press. dynamic assessment of retarded disabilities. New York: St. Luke’s- performers. Baltimore: University Roosevelt Hospital Center. About the author: Park Press. Nelson, C., Dijk, J. van, McDonnell, Erika Boers A. P., & Thompson, K. (2002). A Feuerstein, R., Rand, Y., (PhD-student University of framework for understanding Hoffman, M. B., & Miller, R. Groningen, Department of Special young children with severe (1980). Instrumental enrichment: Needs Education and Youth Care) multiple disabilities: The van Dijk An intervention program Royal Dutch Kentalis, the approach to assessment. Research for cognitive modifiability. Netherlands and Practice for Persons with Baltimore: University Park Press. [email protected] Severe Disabilities, 27(2), 97-111.

12 • DbI Review • July 2012 Pre-conference

ADBN 2012 Announces a Pre-conference Tuesday, November 6, 2012 A good senior life with a combined sight and hearing loss

On occasion of the 9th Deafblind International ADBN knowledge on hearing and vision loss already exists. Conference in Lund, Sweden, November 7-10, 2012, Nursing homes, carers, hospitals, labour market, The Nordic Centre for Welfare and Social Issues will activity centres, families, etc. would also benefit host a pre-conference day on November 6 that will from knowledge of dual sensory impairment such as focus on seniors with hearing and vision loss. hearing and vision loss. Ignorance about this issue A couple of years ago there were ongoing Swedish, may force the elderly into isolation and thus cause Norwegian and Danish projects on seniors with loneliness, life-style diseases and reduced quality of hearing and vision loss. Knowledge on hearing life. General knowledge of the elderly is at the same and vision loss among the elderly is something that time something we would like to communicate to should reach far beyond the usual circles where professionals in the field of hearing and vision loss.

13:00 – 13:05 Welcome by the Nordic Centre for Registration via our website is required in the same Welfare and Social Issues way as for courses in Dronninglund. 13:05 – 13:45 On geriatrics – quality of life, Final date for registration is October 7 at life-style and health of the www.nordicwelfare.org/dbkurser elderly – TBD The conference language will be English for both the 13:45 – 14:00 Break pre-conference and the main conference. 14:00 – 14:45 On dementia – Arlene Astell, Please visit the website for the main conference here: Stirling University www.skane.se/adbn2012 14:45 – 15:15 Coffee break We invite you to participate and spread the word to other interdisciplinary contacts in your countries. 15:15 – 16:15 A good life with dual sensory loss – Liz Duncan & Megan Mann, Conference venue: Sense Scotland Scandic Star Hotel, Glimmervägen 5, SE-224 78 Lund, Sweden 16:15 – 16:30 Round-up Tel.: +46 46 285 25 00 The conference is free of charge and the Nordic E-mail: [email protected] Centre for Welfare and Social Issues will be serving coffee and cake.

INDEPENDENT DEPENDENCY LIVING IN TWO REALITIES The 9th Conference of Acquired Deafblindness Network Lund, Sweden in November 7-10, 2012

www.skane/adbn2012

July 2012 • DbI Review • 13 Generating positive interactions

Generating positive interactions in regular school settings for Australian students who are deafblind or have multiple disabilities

Authors: Dr Robyn Cantle Moore ([email protected]) and Dr Mike Steer ([email protected]) Senior Lecturers, RIDBC Renwick Centre / University of Newcastle, North Rocks Australia

Abstract as full-time members in age- The paradigm shift from special The social participation of students appropriate, typical classrooms in placement to supported placement who are deafblind or have their local schools (i.e., the schools in regular school requires that multiple disabilities in regular they would attend had they not teachers and other educational school classrooms and playgrounds had a disability) and receive the team members take full advantage is powerfully affected by student supports necessary to participate of the rich learning environments behaviour, teacher behaviour, the in both the academic and social available to non-disabled students curriculum, teaching strategies, activities of their peers (Correa- in order to address the specific characteristics of the classroom or Torres, 2008). learning needs of those individuals playground and school community, Placing students who are whose education is their new as well as the ways these elements deafblind, or who have multiple focus. combine to produce positive disabilities in regular education learning environments. Social skills, classrooms is, as the late June Who is considered deafblind in addition to academic skills and Downing has asserted, an or as having multi-sensory a student health-related focus expression of their “right” to an educational needs? appropriate education (Downing, provide the three great challenges Over the years, a variety of terms to successful regular school 2001; Downing and Peckham- Hardin, 2007). If a “right” can have been used to describe dual placement for students who have impairment to hearing and sight traditionally been considered too be tentatively defined as an interest embedded in law, the (Aitken, Buultjens, Clark, Eyre and difficult to serve. Some classroom Pease, 2000). The term “deafblind” teachers perceive a lack of social preservation of which is a duty, and the violation of which requires replaced “deaf/blind” and “Deaf- and personal skills to be associated Blind” in Britain around 1993 with difficulties in peer acceptance a remedy, then no such “right” currently exists in Australian because the use of one word and work-related behaviours such recognised the single nature of as keeping on task or completing educational law (Devlin and Devlin, 2004). This circumstance makes the resultant combined sensory tasks with minimal assistance. This disability. In other jurisdictions, paper examines approaches that the proposition that such students should be educated in regular deafblindness has been included have proven effective in increasing within a larger (yet still relatively positive classroom and playground school settings, both an important goal and a foundation for systems small) group of people labelled interactions. severely or multiply disabled, since “Recent literature on inclusive advocacy. Whether as the result of law, as much of the available educational education (Koster, Nakken, Pijl technology for students who are and van Houten, 2009, p. 135) has in the USA, or an important goal, as in Australia, it is not suffice that deafblind was designed for use emphasized the importance of with students in the larger multiple meeting social needs [of students] these students are just “in the classroom” – it is necessary that disability category. more emphatically”. Fully inclusive Children who are deafblind are education occurs when students their attendance results in social participation and real learning. often singled out educationally with disabilities are welcomed because impairments of both

14 • DbI Review • July 2012 Generating positive interactions sight and hearing require the often intensive needs of this multiple disabilities. Generating thoughtful and unique educational diverse clientele. positive interactions between approaches to enable individuals The New South Wales an individual and student peers, to attain their fullest potential Department of Education and an individual and teachers, and (Miles, 2000). Indeed, children and Communities (DEC) has in the past between the school and the young adults who are not just decade, taken steps to redefine families it serves are all-important deaf, nor just blind, experience those individuals it will accept to the success of an educational a compounding of learning as deafblind for the purposes of placement for a student who is difficulties due to the combination receiving additional resources in deafblind. of the two impairments. Further, school settings. Over time, analysis The increasing attempts the diversity of impairment is so and debate on the definition as to successfully integrate into great among those designated to who might, or might not be mainstream schooling a broad deafblind, or dual-sensory considered deafblind resulted in spectrum of students with impaired or severely multiply the realisation by Department disabilities, has generated disabled, that there is no common officials that the long accepted significant challenges for the baseline from which to begin the criteria were overly stringent regular classroom environment education of a “deafblind” child and not particularly accurate. In and generic classroom teacher. (Clark, 2000). February 2001, a new definition Students with a complex primary Education is, of course, one of was adopted, stating: sensory disability (vision or hearing the most important influences “Students must have a hearing loss) and those who are deafblind, in shaping a person’s life. For and vision impairment, both at may have associated behaviour this reason, eligibility to receive levels that severely impact on their problems. They might well special supports so education ability to learn and which result experience difficulty in adjusting might be accessed is of critical in unique educational needs. In to life in a regular classroom with importance. Education expands particular, these students will its wider variety of teaching- intellectual and social horizons require an alternative means of learning factors, especially if and establishes social relationships communication (generally a tactile they have already experienced that form the basis for inclusion system) and/or highly specialised a lengthy history of one-to-one into adult life (Foreman, 2011). It technology to facilitate their early intervention or enrolment has been asserted that Australian communication. There must also in a small, special class program. society is committed to an inclusive be evidence that the combined Of course, if a student has ethos (Devlin and Devlin, 2004), impact of the dual sensory always been part of the regular therefore all Australian students impairment requires an intensive education environment these sorts who are deafblind or have multiple educational provision beyond that of difficulties are substantially disabilities have a “moral right” provided for students solely with reduced. to be educated in typical school hearing or vision impairment, or environments that fully accept severe intellectual disability. In What is a problem them. This means they should be order to qualify for additional behaviour? included, wherever possible – in assistance in NSW schools, the What sets a problem behaviour the classroom, the playground approval of a Coordinator of apart from other behaviours? How and in extracurricular activities Student Counselling and Welfare, is it identified so that it can be with their non-disabled peers – together with a Coordinator of dealt with? (Most teachers are sure while receiving in addition, the Special Education must be sought... they recognise it when they see sometimes extensive supports and before a student can be confirmed it.) As Charles (1991) has pointed services they require by virtue of as having met these criteria” out, for many teachers, problem their disabilities. (Steer, 2001). behaviour means “actions that To achieve these ends, complex disrupt, destroy, hurt or infringe service networks and significant Social behaviour and upon the rights of others” (p.5). resources are often necessary. It schooling Such behaviour is considered to is highly important then, that the Social skills, as well as academic reduce teacher effectiveness as organisations charged by society skills and a student health-related with providing quality educational focus provide the three great services for all proceed to adopt challenges to successful regular service eligibility definitions and school placement for students with assessment criteria that address

July 2012 • DbI Review • 15 Generating positive interactions well as pleasure in teaching and more about what is wrong with and Shogren, 2011). For example, learning and therefore needs to the school system than what is effective early intervention is be minimized, controlled or re- “wrong” with the individual, contingent upon the development directed. and that many individuals with of relationships that consider Conway (1996) presents a severe reputations have modest, parents to be partners in scenario much like the following but essential, educational choices assessment procedures and in conversation between two that are not currently being made. the development of educational teachers, about the threat of Crimmins (1994) has expanded programs. Thus, it is vital to on- having a student with a “severe this point asserting that, persons going education that teachers reputation” in class. with challenging behaviours often appreciate the importance of the experience lives with not only student’s immediate and extended l Teacher A: I’m getting George limited choices, but restricted family (Chen, 1999; Etheridge, in my class. I’ve heard he’s a real access to their local communities 1995). Historically, parents and behaviour problem now and I and few meaningful social families of students with dual- don’t want him. He’ll just totally interactions. sensory disabilities have had to disrupt my class and I won’t get accept inappropriate educational everything covered before the Why do students service provision. Many, according next topics test. misbehave? to Furneaux (1988), have felt l Teacher B: Have you had removed from the educational A number of reasons have been problems with George before? I process and frustrated at the mooted to explain why students didn’t realize he’d been in your displaced social environment with disabilities misbehave, class. of their child. Concerns for whether they are in regular appropriate educational provision l Teacher A: Well no, he hasn’t. school or special purpose are, as Allen (1995) has pointed But I’ve heard he’s a major settings. Foreman (2000, 2011) out, inextricably linked with problem for everyone, so of has suggested three reasons, schooling practices and parental course, he’s going to be an issue commonly reported by special involvement with that process. for me. (M. Steer, April 2002, educators: The challenges for parents, personal communication). (a) students do not have teachers and care-givers of The scenario points to a number sufficient or appropriate skills in students who are deafblind are of important issues. These their repertoire; include: many – not the least being the (b) environmental factors may challenge of including the child (a) the prejudgment of students hinder their ability to learn or in the ebb and flow of family and based on their reputation; apply skills; and community life (Miles, 2000). A (b) an assumption that a (c) students are not being deafblind child does not respond problem behaviour will always sufficiently reinforced for to typical family interactions in be one; appropriate behaviour. ways that might be expected, (c) that it is the student who has and as a consequence, parents the problem, not the behaviour, While these reasons reflect a will often report having been and that strong behaviourist perspective, challenged in their efforts to (d) students who interrupt the and suggest that students react include him or her. For example, flow of a teacher’s knowledge mainly to external influences, they instead of having received smiles and performance have a also point to the importance of and lively eye contact from their behaviour problem. skilled teaching being part of the young child, the parents will have educative process. sought more subtle rewards, such For students with significant as small hand or body movements. disabilities in regular classrooms Home and school influences Parents will also have had to who have behaviour patterns An extensive professional literature change their perceptions with that do not conform to teacher discusses the importance of regard to typical developmental expectations, the issues can be parents and educators of students milestones. multiple. with dual sensory disabilities Parents of students who are Smull and Harrison (1992) working together (Allen, 1995; deafblind or multiple disabled have pointed out that, people Turnbull, Turnbull, Erwin, Soodak will have expectations of teachers with severe reputations tell us with regard to the education of

16 • DbI Review • July 2012 Generating positive interactions their children. In a list of seven l time constraints, and of curriculum can be the genesis expectations, Charles (1991) l the possibilities of group of school-related behavioural included two that appear to support. problems (Foreman, 2011). directly influence the promotion of These problems can be further positive interactions in the regular The one constant factor in exacerbated for students with school classroom. Specifically: whatever the outcome of those disabilities who attend regular l Parents expect teachers to care choices is time. Generally, neither school settings where curriculum about their child as a valued the teacher nor the parents ever content may be presented in a person; have enough time to satisfy their manner well above their current l Some parents expect teachers perceptions of what the child or ability – such as the learning of to discipline their child, because one another needs. Establishing a spoken language other than a sense of order and control is relationships, talking and listening, English (LOTE) in a primary grade necessary, not only at school, but observing and demonstrating, and classroom. When customised also in the community. working together all take time. instructional processes have not Thus, it is essential that whatever been appropriately designed to Another perspective emerges in time is necessary to develop accommodate student needs and some of the professional literature positive teacher-parent-family differences, there is little incentive which suggests that many teachers interaction, it is characterised by its for the deafblind student to seem to place responsibility for quality. participate and learn. A failure school conduct of students with cycle is thus initiated, followed by special needs, including behaviour Curriculum problem behaviour, followed by problems, squarely on the parents The inclusion of students with further failure to learn, and this (Croll and Moses, 1995). Patently, it severe and multiple disabilities, pattern continues until the student has always been the case that both who themselves represent a wide becomes trapped in a negative home and school contribute to the variety of abilities and needs, learning and social spiral from generation of behaviour problems presents major questions regarding which there is no easy escape. at school. Both need to play a part the development of appropriate Neary and Halvorsen (1995) in addressing the problems and curricula and instructional have specified that a fully inclusive in promoting positive interactions strategies (Goetz, 1995; Foreman, curriculum should emphasise at home and at school. This factor 2011). Providing a quality the student’s social participation has been tacitly acknowledged educational program for students as a member of the class, and in Australian education where with profound and complex systematic instruction of the schools are required to formulate disabilities that is simultaneously student’s individual educational policies in partnership with functional, inclusive and outcomes program (IEP) objectives. It is families and their community on orientated, can be an extremely a fundamental premise of this the premise that positive student difficult and complicated process process that new skill, concept and behaviour is more likely to result for educators and ancillary services behaviour acquisition occurs within from home, school and community personnel (Smith, Gast, Logan, and the on-going social context of the collaboration. Jacobs, 2001). typical classroom. Thus, a creative Flexible and creative ways of Many schools and programs response to the learning of a LOTE building successful partnerships continue to provide instruction and in the primary grade classroom with parents need to be considered related supports for these students may be, for example, that class (Allen, 1995; Guralnick, 2008), and in a passive manner, focussing members learn through social a range of factors require thought on therapy goals rather than on interaction and help-giving, the prior to commencing any dialogue. integrated therapy services that gestural-tactile language of the Among these important factors facilitate the attainment of social student who is deafblind. are: participation and educational l the choice of location for goals. In addition, many special Teaching environment and meeting and generating positive educators and ancillary support methods relationships (the family home, personnel lack sufficient training, Specific factors that adversely school or some other setting); expertise and experience in affect positive interaction and l whether or not the child should working with students who social participation include the way be present; have multiple disabilities. As a that teachers teach. Teachers might l the availability of transport; consequence, the implementation (continued on page 52)

July 2012 • DbI Review • 17 8th DbI European Conference

8th DbI European Conference

August 27-31, 2012, Lille France

Identities and changes Commonalities across deafblindness. Learning from each other.

Why this topic? changes and state decisions. It all these identities are mutually Life trajectories of deafblind is really a paradox that this has connected and contribute to people differ from one person to occurred since the recognition the building of each individual’s another. But all of them have to of Deafblindness as a unique identity. face differing degrees of changes. disability was recently proclaimed These changes will relate to aging and endorsed by the European The four themes of the (transition from childhood through Union and various states. In many conference: instances, these changes have adulthood to old age), family l Denial, shame and pride. resulted in the mixing together of contexts, and to the evolution of Access to other people’s minds deafblind services with other types their physical conditions (especially and affective involvement. of disabilities. when deafness, blindness and When facing obstacles and Therefore, the purposes of other difficulties appear). processes of change, people this European conference is to These individual changes with Deafblindness and/or their show and describe the resilience occur in a social context which companions often face feelings of ‘Deafblindness’ as a unique is also subject to other changes of shame. Examples could disability in spite of these changes outside their control including include for the deafblind person, and to find ways to promote technological, political, economic their feeling of shame for using a approaches that will positively conditions and the type of mobility stick; for the companion affect the lives of deafblind people knowledge used by professionals. or partner, their feeling of shame and their families. While all these changes require for accompanying a congenitally The format of the conference creativity in each individual’s life, deafblind child that is behaving will reflect the idea that deafblind at the same time they also create differently. This feeling of shame people should be given all the vulnerability in their lives including is present in all human beings space they need to assert their the work of the professionals from the beginning of their lives. own identities and perspectives. associated with them. Shame appears in the contact It should also ensure that all Lately in Europe, many people between the person that feels the varied identities related involved in Deafblindness the shame and the gaze of the to Deafblindness (persons (including deafblind people others. Conversely, pride can also with congenital or acquired themselves, family members and appear when shame is overcome Deafblindness, family members or professionals) had to face huge through a type of relationship professionals) will receive focus, changes in the organisations they that transforms a difficult with the intent to show how are related to as a result of policy situation into an achievement. Special attention should be given Some to the role of support groups, members and other types of relationships of the that facilitate the change from Conference one of shame to one of pride. Local l Empowerment: The idea here Planning is to look at how the power Committee of making decisions and the knowledge about deafblindness is distributed among the deafblind people and the social

18 • DbI Review • July 2012 8th DbI European Conference

story of their own their being reflected in other lives and by playing people’s eyes and actions. with the various Congenital Deafblind people are roles they can considerably vulnerable from endorse in relation that point of view. with other peoples’ l History of Deafblindness and roles. What is it report of the focus group to be deafblind? on the commonalities across Is it to be labelled Deafblindness. Historically, ‘deafblind’ by the word ‘deafblind’ was experts or is it first used to describe children deciding that “I who were born deafblind or am Deafblind”. became deafblind very early in One can see him or life. Eventually other types of herself either as a Deafblindness were included ‘congenital seeing under the ‘deafblind’ category (ie and hearing’ person acquired Deafblindness, elderly in the context of Deafblindness). However, most Deafblindness or of the time, service providers as a referee in and professionals deal with only the context of a one of the two main categories football match. of Deafblindness (Congenital Identity involves or Acquired) because there a historical are perceived differences in continuity in life the developmental conditions and the capacity and in the type of approaches to play with a world around them: Who they need. Therefore, it seems variety of social roles mutually knows? Who is the expert? Who very important to describe related and also connected makes the decisions? Knowledge how the various worlds within with other people’s roles. This is not only on the side of the Deafblindness developed need for fostering the identity professional ‘experts’. The source historically and to demonstrate is visible in many deafblind of knowledge is rather with how much each group can people that like to write or both deafblind persons and their learn from each other and to tell the story of their lives. various partners; especially the equally contribute to the overall However, the resilience of these collaboration between these knowledge in the Deafblind field. life stories depends a lot on sources of knowledge. The main focus of this session would be The members of the DbI Conference Scientific Committee: to look at how the expertise (back row): Jacques Souriau (France), Ursula Heineman (Austria), Marleen of Deafblind people can be Janssen (The Netherlands), Ole Mortensen (Denmark), practically recognised together Paul Hart (Scotland), Alexis Karacostas (France); with how the roles of their (front row): Mira Tzvetkova (Bulgaria), Linda Eriksson (Sweden) partners can be mutually defined (missing from photo): Georgia Pappa (Greece) in such a way that the agency of Deafblind people is ensured in order for them to “take the floor” l Identity and narrativity. Building the identity. Identity is built everyday by each individual. Several fields of science (sociology, neurology, psychology) describe how human beings achieve their identity in two ways: by constructing the

July 2012 • DbI Review • 19 A new development

A new development:

the Kentalis Deafblindness Centre of Excellence in the Netherlands

Chrétienne van der Burg (left) and Trees van Nunen (right)

oyal Dutch Kentalis characteristics, finds itself Making the knowledge is a national at a substantial risk within of deafblindness useful in Rorganization in an organization as large as the professional field was the Netherlands that has Kentalis. The fragmentation hampered for the same specialized in the diagnosis, of services, furthermore reason. Since there was care and education of people make it harder to retain insufficient liaison among with impaired hearing or expertise specialized for this the various units involved in communication for more population. Our aim is to providing services to people than 180 years. Kentalis respond more efficiently and with deafblindness, a more serves children, young people effectively to the questions integrated range of services and adults who are deaf, of people with deafblindness was unlikely to arise. There seriously hearing-impaired, by means of a better was also a need for a clear or deafblind, as well as organization of our services definition of the target people with serious speech and activities. We believe group, because of the risk and language difficulties. that A Deafblindness Centre of failing to identify some Kentalis has 4500 employees of Excellence is the answer. clients as being deafblind. at approximately 85 sites in This analysis was the the Netherlands. There are Problem analysis starting point for launching around 15,000 clients. The Danish philosopher the Kentalis Deafblindness Kentalis’ expertise goes Søren Kierkegaard observed Centre of Excellence. This back many years in the that ‘Life can only be new Centre is oriented education, care and diagnosis understood backwards, but towards a goal in which of children and adults with it must be lived forwards’. there is a close link among acquired and congenital This principle is very relevant clients, staff, organizational deafblindness. A merger when carrying out a problem units and working locations, and major reorganization analysis. both within and outside within Kentalis has led to The communal view of Kentalis. The safeguarding requirements for a critical deafblindness appears of knowledge about evaluation of services for to lose focus because of deafblindness is an essential people with deafblindness. the broad distribution of part of this aim. This low incidence clients with deafblindness population, characterized across the multiple Kentalis by its complex wide ranging organizational units.

20 • DbI Review • July 2012 A new development

Objectives of the people with deafblindness Organization structure Deafblindness Centre and the range of services. The figure below shows the of Excellence We offer a well-defined organization structure that range of services according This Centre brings together was started in January 2012 to an established working to achieve the objectives. existing Kentalis services method. and activities that are Who are the clients? They oriented to people with are children and adults deafblindness and experts How are we to achieve with congenital or acquired in diagnostics, education, our aims? deafblindness, who approach treatment, support and The Deafblindness Centre of Kentalis for support in scientific research related Excellence will focus on: relation to their needs for accommodation, education, to deafblindness; erasing l Achieving transparency and differences of vision consistency in the range of diagnosis, treatment, or and attitude among services for various stages counselling. organizational units. of life. Who are the staff who will work with the deafblind The Deafblindness Centre l Concentrating staff clients? All Kentalis staff of Excellence accordingly has expertise. who work with people the following objectives: l Improving quality of service with deafblindness will be l To apply known effective delivery. methods, interventions and interviewed to ascertain l Encouraging deafblindness their specific expertise. innovations currently in knowledge development practice and to investigate Employee profiles will be and the dissemination of created to determine the the development of new that knowledge. methods and interventions. allocation of current staff l Forging links with interest to jobs, departments and l To respond to individual groups and other parties working locations within needs more effectively and that work on behalf of Kentalis. Staff will be efficiently, and in a more people with deafblindness, selected according to their integrated way, as viewed both in the Netherlands best fit to the target group from the perspective of a and abroad. (i.e. children or adults with person with deafblindness. l Attempting to remove congenital or acquired l To improve the match current obstacles that exist deafblindness); their special between the demands of in legislation.

Client

Management Stakeholder team consultation Staff who work with deafblind clients

Trainee Kentalis staff

Base team Client organizations MT Unit Knowledge team

July 2012 • DbI Review • 21 A new development

areas of current responsibility possible. They can be sure education, rehabilitation, or specific expertise of a consistent response, care, safeguarding regarding deafblindness. This whether related to diagnosis, knowledge, consultation process will have established education, treatment or and communication coaches. a database describing the support. It will be clear to Our initial emphasis is on expertise, products and them from the outset of refining and firming up the services currently available implementing this Centre objectives, with subdividing within Kentalis. where their questions can those objectives that are The base team comprises best be answered. They feasible in both the short Centre of Excellence should be confident that and the long term. Sharing ambassadors who will keep the professional (or carer) knowledge and teamwork their fellow employees they deal with is fully both have a high priority, not informed about a wide qualified and is an equal only within Kentalis, but also variety of developments. communication partner; with other organizations that This Kentalis base team and furthermore that the provide services to people with expertise in the field philosophy and methods with deafblindness in the of deafblindness are drawn used are evidence-based and Netherlands and abroad. We from all regions in the result from scientific research should also emphasize that Netherlands in which Kentalis through close collaboration clients will also be involved is present or representative with the University of and embedded in further as widely as possible across Groningen. development of the Centre current education, care and of Excellence. diagnostic services. Where do we want In closing, we wish to The knowledge team to go with the say that the enthusiasm comprises experts in the field Deafblindness Centre with which Kentalis of deafblindness who are professionals and clients responsible for implementing of Excellence? with deafblindness and their areas such as research and The Deafblindness Centre social network are coming innovation and development of Excellence opened together in developing of a system of trained on 1 January 2012. We and implementing this consultants in deafblindness. documented our Philosophy Deafblindness Centre will of Action as the basis for the guarantee a high degree How does this centre’s methods. The Centre of excellence in Kentalis’ affect people with of Excellence endeavours continued support for people to develop its activities on with deafblindness. deafblindness? three interrelated pillars: People with deafblindness highly specialized services, Chrétienne van der Burg, who approach Kentalis are research and innovation psychologist given the most appropriate and consultative services. Trees van Nunen, and correct answers to There are seven basic focuses psychologist their questions as quickly as for attention: diagnostics, [email protected]

Omissions We apologise for the omission of references from an article in the last edition (January 2012) Article title: Conference Plenary Presentation: Transition (pages 15-17). The author had left out references as follows: National Family Association Deaf-blind(NFADB), Transition and post-school life survey, August 26, 2008. Petroff, J. G, (2001) National Transition follow-up study of youth identified as deafblind: Parent perspectives. Monmouth OR:NTAC.

22 • DbI Review • July 2012 The daily life of deafblind people

The daily life of deafblind people

Nordic Conference 2012

rom April 23 through 26 literally 100% deaf and (2012), the Nordic Centre blind, is their worst Ffor Welfare and Social nightmare. As Nina Issues hosted a Nordic conference Skorge, who has Usher on deafblindness. Some 170 syndrome, put it in a professionals from Denmark, workshop: “When I Norway, Sweden, Iceland and am called deafblind, I Finland gathered in Oslo, Norway get the same ominous for the event. They enjoyed ten feeling someone with plenary speakers and could each cancer would get if pick four of 26 workshops. The ‘welcome to the valley main focus of the conference of death’ was written was the everyday life of people at the entrance door with deafblindness in relation to the hospice”. to professionalism, visibility and At the same time, Snapshot from the workshop held documentation. using the ‘d-word’ makes it much by the Scandinavian Network on The conference was held in easier for these individuals to Acquired Deafblindness (SNED) mixed Scandinavian tongues and receive assistance from various fully interpreted into Icelandic, social assistance agencies, Bjerkan argued, that should form Finnish and both Swedish and according to the experience of the basis of the services offered. Norwegian Sign Language. In the some professionals in the Nordic Text: Lasse Winther Wehner autumn of 2012, a booklet on the countries. These professionals Photos: Svein Erik Dahl conference will be available from indicate that they must perform a The Nordic Centre for Welfare and balancing act between offending Social Issues in Danish only. the people they work for and Below you can read a few obtaining the best help for them. Advice from Dr. Jude highlights from the conference. Deafblindness in ICD-11? Nicholas regarding What’s in a word? Bertil Bjerkan, associate professor Tactile Communication One of the hot topics recently at the University of Oslo, pleaded If you work with people with in the Nordic countries is the term that we need a specific diagnosis congenital deafblindness, ‘deafblindness’. Some people for deafblindness. “In the World you can help support their identified as deafblind by the Health Organization’s International cognitive development. Here’s Nordic definition do not identify Classification of Diseases (ICD), you what Jude Nicholas suggests: themselves with the label, as they may find CHARGE, Usher and other l Assign meaning to the often have residual hearing and syndromes causing deafblindness. unique bodily/tactile bits of or vision. Losing the rest of their However, you will not find communication they use. residual senses, rendering them deafblindness even though it is l Start early providing tactile a condition which is unique and stimulation, and using tactile consistent. A girl of eight years signs. with deafblindness and a man l Create a harmonious social aged eighty with deafblindness interaction. have something in common l Use the tactile sense unrelated to the reasons for the to create the necessary deafblindness but related to the emotional relationships. impact it has.” It is the impact, l Learn to understand the relationship between tactile Monika Steorn gives a plenary cognition/working memory speech on the relationship and language learning. between pride and shame

July 2012 • DbI Review • 23 Empirical research

Empirical research in the field of deafblindness

About the author: Ineke Haakma, (PhD-student University of Groningen, Dept of Special Needs Education and Youth Care), Royal Dutch Kentalis, the Netherlands, [email protected]

1. The relevance want to figure out if there practices based on the of empirical is a relationship between available evidence. In their motor disabilities and search for evidence, teachers research in problems related to social can and should make use the field of interactions. We may have of empirical findings to deafblindness all kinds of assumptions of determine which practice will how the two relate. In order be beneficial. The question How can we provide people to test these assumptions remains however, how can with deafblindness the care we have to collect data. we judge the findings of an and education they deserve Once we know the impact empirical study? and need? How do we of motor problems on social One way to judge the establish best practices in interactions, practitioners quality of an empirical study the field of deafblindness? can use this information to is to evaluate the findings in Empirical research provides guide their behavior when light of the research design. the means to answer such trying to improve the social By evaluating the research questions. Empirical research interaction with people who design we can determine is about formulating are deafblind. whether or not we find research questions, the outcomes of the study generating assumptions and 2. Evidence based convincing. What’s important expectations, collecting data practice to remember is that there and confirming whether are different designs possible or not the assumptions As stated, empirical research and there are different and expectations are valid. provides insights in a opinions about the quality of The findings of empirical particular situation. It helps the designs. research serve to inform the us to figure out why or people in the field (parents, how something happens. 3. Randomized caregivers, teachers, As such, empirical research controlled trials communication partners or is also useful to compare practitioners) about what practices. Empirical research According to Odom et al. works. However, it is up to allows us to evaluate the (2005) research is designed the people in the field to effectiveness of a method, to rule out alternative decide if, when, how or to training or intervention. explanations for both the what extent he or she will For instance, a teacher of results of the study and the use the empirical findings. a special education class conclusions that researchers Empirical studies often wants to know what kind of draw. The higher the quality provide insights into a teaching instruction method of the research design used, particular phenomenon, he should use. The teacher the more confidence we case or situation. For will preferably use a method can have in the findings of example, people with which has proven to work, the study. The randomized deafblindness often have as opposed to a method control design is often additional disabilities, such as that has not been tested. seen as the best design to disabilities related to motor The teachers should have pinpoint specific causes of functioning. Let’s say, we the opportunity to choose phenomena and exclude

24 • DbI Review • July 2012 Empirical research

Ineke Haakma

other explanations. The design provides multiple opportunities to control for (possible) confounding influences. Therefore it is often called the golden standard of empirical research (Rossi, Lipsey and Freeman, 2004, p. 237) However, randomized trials tend to rely on a large number of observations. In general, these studies require large groups of participants. This is difficult to accomplish neurological impairments. look at other study designs when studying people with For these reasons, conducting of which two promising deafblindness because it randomized control trials in candidates will be described. would be very hard to find the field of deafblindness a large enough group of is extremely difficult, if not 4.1. Case study research people with deafblindness impossible to do. The first design is case study who all can participate. research. With this design Another difficulty with such 4. Single case we can make a detailed, a study is the heterogeneity studies in-depth study of a single of the population. If we subject or a small group. want to compare two Parker, Davidson and Banda The case study design can be groups of people, we need (2007) also note that we used for multiple purposes. to assume that both groups cannot use randomized It can be used to foster are to some extent alike. group designs to establish innovation; to develop new We need to conclude that evidence that supports skills; to validate theoretical the intervention really has existing and emerging assumptions; to study rare effect, and that the effect is practices in the field of phenomena and to provide not caused by other factors. deafblindness, because data which can be used as People with deafblindness of the low incidence and a basis for further research often have additional heterogeneity of the (Barlow, Nock and Hersen, disabilities. These additional population. If randomized 2009). The use of multiple disabilities can possibly control trials are so difficult data sources is a key strength have a large effect on their in the field of deafblindness, of the case study design. behavior and therefore affect the question remains Data sources are for example, the outcomes of such a study. whether we can attain the interviews, questionnaires Outcomes are influenced evidence needed to establish and observations. By by additional disabilities best practices in the field of obtaining and comparing such as motor, cognitive or deafblindness. We need to information from different

July 2012 • DbI Review • 25 Empirical research

sources we gain a detailed with different participants. concrete, context-dependent understanding of that which This design offers a lot of knowledge. However, we study. flexibility and possibilities. behavior is almost always The design is flexible because dependent on context. For 4.2. Single subject it is easily adaptable to example, Odom et al. (2005) design multiple situations. The describe that the context design makes it possible to in special education is very The second design is the monitor the effects of an complex and should always single subject design. Single intervention at different be taken into account. It subject designs are used moments in time. We can is therefore difficult to to test the effectiveness of therefore gain detailed state and answer general an instruction, training or insight into the effect of the questions about whether a intervention. Single subject intervention on an individual. practice in special education designs are experimental is effective. Researchers must designs, similar to determine what context randomized control designs, 5. Criticism and for whom the practice but on a smaller scale. As on single case is effective (Odom et al., such, the single subject studies 2005). Case study research design provides greater is a perfect method for control possibilities than the Single case study designs this purpose because it case study design. There is no have been the subject of requires researchers to take control group; the participant critique. An often mentioned the context explicitly into serves as his or her own criticism is that single account. control (Horner et al., 2005). case studies only provide Single case studies also Behaviour of the participant concrete, context dependent offer ways to ensure is measured repeatedly over knowledge (Flyvbjerg, 2006; generalizability and control. time (before, during and 2011). Consequently, it is Moreover, the single-subject after intervention). We can said that findings cannot be design provides more use techniques to establish generalized on the basis of opportunities to exercise behavioural patterns during an individual case. Another control compared to the the different moments in disadvantage is said to be the case study design. The single time. Through comparison of lack of control of the designs. subject design gives us these patterns we are able Because of the presence of multiple opportunities to to discern the effects of a uncontrolled factors, it is replicate findings. In case particular intervention. We not possible to draw causal studies it is harder to exercise can generalize the findings conclusions (Barlow, Nock control and generalize by replicating the study and Hersen, 2009). The last findings. But even if we example of critique is that cannot control for all possible data is often retrospective confounding factors, we and subjective. Therefore, can still learn from all the But even if we cannot control the results are more likely to “ detailed information derived be affected by the impression for all possible confounding from a particular case. of the researcher. The final point of criticism Such criticisms are not factors, we can still learn from is the subjectivity of data always justified and often collection. We can invalidate need to be nuanced. First all the detailed information this comment, by carefully of all, it is stated that documenting all the steps derived from a particular case case studies produce only ” of the research process.

26 • DbI Review • July 2012 Empirical research

When we explain why we example is a study conducted 7. Conclusion make certain choices, we can by Vervloed, van Dijk, Knoors provide more transparency in and van Dijk (2006). They In this article the utility the research process. Other conducted a case study of scientific research is people can verify the choices in which the interaction addressed. Scientific research or, if possible, replicate between a teacher and a is used for multiple purposes: the study. If we carefully deafblind boy was analysed. to discover principles, to test document our choices, others There are also numerous our expectations, to solve can interpret our findings in single subject studies problems or to develop best light of those choices. conducted in the field practices. Empirical studies To conclude, single subject of deafblindness (Parker, are essential to determine studies are suitable to Davidson and Banda, 2007). what works best. People establish evidence based Janssen, Riksen-Walraven in the field (practitioners, practices (Horner et al., and van Dijk (2003, 2004 and caregivers, parents, or 2005). Moreover, according 2006) conducted numerous teachers) can use this to Parker, Davidson and studies to examine the knowledge to make decisions Banda (2007) we should effects of an intervention about which course of use single subject designs program to improve the actions to take. to validate the most quality of daily interaction In this article there are effective educational and between deafblind children aspects of different research rehabilitation practices in the and their educators. Two designs highlighted. It field of deafblindness. overviews of literature is often assumed that on single case studies are randomized control trials are 6. Examples provided by Parker, Davidson the best research design to and Banda (2007) and provide evidence for what of single case Sigafoos et al. (2008). Parker, works best. However, single studies Davidson and Banda (2007) subject studies and case conducted a literature study studies are perfectly valid In the field of deafblindness of single subject studies on ways to conduct empirical a number of prominent people who are deafblind. research as well. Compared researchers use case studies Fifty-five studies were found to the large scale studies, or single subject designs. in the categories: behavioural the designs are cost effective These researchers use single studies, communication and flexible. Furthermore, case studies to contribute to studies, studies on daily detailed and systematic the knowledge of evidence living skills and vocational single case study research can based practices in the field of studies. Sigafoos et provide a wealth of insights deafblindness. The following al. (2008) reviewed into mechanisms, relations examples illustrate the range intervention studies on and behaviors of individuals. of possible topics which can teaching augmentative and Therefore, we should be addressed using single alternative communication acknowledge the strengths case studies. Bruce, Godbold (AAC) to individuals with of these designs and use and Naponelli-Gold (2004) deafblindness. The purpose them to establish evidence conducted a case study that of the review was to give an based practices in the field of involved observation of overview of evidence based deafblindness. communicative functions practice in the design of However, we should and forms expressed communication interventions remember that research is by individuals with for individuals with sensory not all about discussing the deafblindness. Another impairment. pros and cons of choosing a

July 2012 • DbI Review • 27 Empirical research

particular methodology. That (2006) states: “Good social people in the field (parents, is only a part of it. Research science is problem driven and teachers, practitioners) and is about using the methods not methodology driven.” especially that people with that will best help answer As researchers we should do deafblindness will benefit the research question and our best to address those most. choosing a method which problems. It is precisely when fits the context. As Flyvbjerg we address those problems,

References: children: Do intervention effects endure? Journal of Developmental and Physical Barlow, D. H., Nock, K., & Hersen, M. Disabilities, 16, 73-94. (2009). Single case experimental designs: Janssen, M. J., Riksen-Walraven, J. M., Strategies of studying behavior change & van Dijk, J. P. M. (2006). Applying (Third edition). Boston: Pearson. the Diagnostic Intervention Model for Bruce, S., Godbold, E., & Naponelli-Gold, fostering harmonious interactions between S. (2004). An analysis of communicative deaf-blind children and their educators: A functions of teachers and their students case study. Journal of Visual Impairment & who are congenitally deafblind. Re:view, Blindness, 100, 91-105. 36, 81-90. Odom, S. L., Brantlinger, E., Gersten, R., Flyvbjerg, B. (2006). Five misunderstandings Horner, R. H., Thompson, B., & Harris, K. about case-study research. Qualitative R. (2005). Research in special education: Inquiry, 12, 219-245. Scientific methods and evidence-based practices. Council for Exceptional Children, Flyvbjerg, B. (2011). Case Study. In 71, 137-148. Denzin, N.K. & Lincoln, Y.S. eds., The Sage Handbook of Qualitative Research, Parker, A. T., Davidson, R., & Banda, D. R. 4th Edition (Thousand Oaks: Sage (2007). Emerging evidence from single- Publications), pp. 301-316. subject research in the field of deaf- blindness. Journal of Visual Impairment & Horner, R., Carr, R., Halle, J., McGee, Blindness, 101, 690 – 700. G., Odom, S., & Wolery, M. (2005). The use of single-subject design research to Rossi, P. H., Lipsey, M. W., & Freeman, H. E. identify evidence-based practice in special (2004). Evaluation: A systematic approach. education. Exceptional Children, 71, 165- (Seventh edition). Thousand Oaks: Sage 179. Publications. Janssen, M. J., Riksen-Walraven, J. M., Sigafoos, J., Didden, R., Schlosser, R., & van Dijk, J. P. M. (2003). Toward a Green, V.A., O’ Reilly, M. F., & Lancioni, G. diagnostic intervention model for fostering E. (2008). A review of Intervention studies harmonious interactions between deaf- on teaching AAC to individuals who are blind children and their educators. Journal deaf and blind. Journal of Developmental of Visual Impairment & Blindness, 97, and Physical Disabilities, 20, 71-99. 197-214. Vervloed, M. P. J., van Dijk, J. M., Knoors, Janssen, M. J., Riksen-Walraven, J. M., & H., & van Dijk, J. P. M. (2006). Interaction van Dijk, J. P. M. (2004). Enhancing the between the teacher and the congenitally interactive competence of deaf-blind deafblind child. American Annals of the Deaf, 151, 336-344.

28 • DbI Review • July 2012 Country news

Australia

National DeafBlindness it rained on Saturday all and also to share experiences Conference Sydney day. There was a tour to about representing people 2013 Healesville Sanctuary to with deafblindness that see the Australian native encourage others to do the The 2013 Australian National animals, then on to a nearby same. For further information Mike Steer, Deafblindness Conference winery. Some campers went contact : meredith.prain@ Committee will be held in Sydney. The bushwalking along the ableaustralia.org.au Member Forsight Foundation for Warburton Trail, to the cafe, Australian the Deaf and Blind’s Board on a flying fox and canoeing Deafblind has agreed to convene the Ablelink and of course there was a Council event in collaboration with The national Transport great deal of social chat. (www.deafblind. other Service Providers, for Accident Commission has It was great fun and there org.au) example, the Deafblind granted Able Australia in were plenty of laughs. Staff reports: Association of NSW, Deaf Melbourne, a short term from Western Australia’s Society, NSW/ACT Guide project on “Peer to Peer Senses organization travelled Dogs’ Association, Vision Braille Training” for the to Victoria to assist Able Australia, Royal Institute for current financial year. Two Australia staff at this Deaf and Blind Children, trainers are deafblind and important event. ABLE Australia and a group have received ongoing of passionate individual training from a Braille supporters. Sponsors are Let’s Connect Teacher on teaching being sought. It is hoped that Let’s Connect is an Able strategies. The trainers are people who are deafblind, Australia program that aims providing Braille training to and require financial at providing assertiveness other deafblind people so support will be able to apply training to people with that they can have better for sponsorship in order deafblindness, their families access to ipad, iphone to participate fully in all and carers. A national through Braille displays. aspects of the Conference. Let’s Connect meeting was There are also other trainers The date and specific venue held in Melbourne on 2nd sharing their expertise have not yet been set. More March, 2012 with delegates with ipad or iphone using information is available at: attending from Queensland, adaptive applications (larger [email protected] New South Wales, Victoria, screen, colour font and many South Australia and more). This project is the first National DeafBlindness Western Australia. A key one of its kind in Australia. Camp, March 2012 message from the speakers Ablelink has secured two was that Australians with small grants this year called Thirty seven Deafblind deafblindness need to join “Peer to Peer training” and campers and 53 volunteers boards, committees and “Low vision and braille access attended a very successful advisory groups to start to mobile devices” We have 12th Deafblind camp at the getting the needs of people been able to buy a range beautiful Yarra Junction, with deafblindness heard of mobile devices including an hour and half from and understood. There ipads, iphones and braille Melbourne. Those attending was a motion to establish displays to facilitate this came from New Zealand, a facebook site for people training. Perth, Adelaide, Sydney, with deafblindness to share Some deafblind trainers are Gosford and Victoria state. ideas about the key issues teaching braille literacy and During the weekend there and needs of people with braille access through iphone were activities even though deafblindness in Australia and ipads. Other deafblind

July 2012 • DbI Review • 29 Country news

Australia trainers are teaching how in New South Wales. A commitment to ensuring continued to access ipads and iphones transcript of this can be people with disability, their using magnification. read at New South Wales family and carers are at The braille trainers Legislative Council, Hansard, the forefront and centre of have attended workshops 2011, page 5829. It can also decision making about the and are preparing their be viewed on line at: http:// supports and services they training materials and www.parliament.nsw.gov.au/ use. The State’s Minister finding ways to improve prod/parlment/hansart.nsf/ for Ageing and Disability communication, cater to V3Key/LA20110915026 Services launched the final different learning styles and stage of consultations for the maintain motivation. This Media Access program on Tuesday 24 April is a huge undertaking and Australia– Social media 2012. involves a lot of support. for people with a In his opening address, This project is the first of its the Minister declared kind in Australia and it is disability “Living Life My Way is one addressing a real need in the New research and guides of the most important deafblind community. More released today by blind reforms our government has information: claire.tellefson@ internet expert Dr Scott ever embarked on. It will ableaustralia.org.au Hollier from Media Access ultimately transform the Australia (MAA) aim at quality of life for people with Usher/Deafblindness making Facebook, LinkedIn disability in NSW.” Following Camp – Western and Twitter more accessible the launch there will be over for people with a disability, Australia 80 state-wide consultations to ensure that one in five for people with disability, Senses Foundation is Australians aren’t left behind their families, carers, pleased to announce that as social media use becomes disability service providers the First West Australian more popular. Research and other key stakeholders. Deafblindness Camp will be conducted overseas in 2011, A discussion paper has been held November 9-11, 2012 which measured various developed that details a at Erin Halliday Recreation social media applications series of practical options Camp, Hillarys, Western against world accessibility for changing the current Australia. Senses will host a guidelines, found LinkedIn NSW disability system to variety of activities over the was the most accessible social deliver person-centred weekend for people who are media platform – with a planning, funding, services deafblind to enjoy: canoeing, usability score of just 29%. and decision supports. archery, swimming, abseiling, Facebook scored just 9% and Targeted consultations for flying fox and team building Twitter scored 0, due to every culturally and linguistically exercises. element of its website being diverse communities and For more information inaccessible. Web accessibility Aboriginal communities contact: karen.wickham@ refers to the degree to will be held later in 2012. senses.asn.au which people with disability More information contact: can perceive, understand, [email protected]. NSW Deaf-Blind navigate and interact online. gov.au Community and Helen The report, guides and Keller Day tip sheets can be found on National Disability the Media Access Australia The Leader of the Opposition Research and website at http://www. in the New South Wales mediaaccess.org.au/online- Development Agenda Legislative Council Mr John media/social-media Under Australia’s National Robertson (Member for Disability Agreement, Blacktown) gave a speech to governments have the House on Helen Keller Living Life My Way – Final consultations committed A$10 million Day with regard to the lack to disability research and of funding and support for Living Life My Way is development. Ministers have people who are deafblind the NSW Government’s now endorsed a National

30 • DbI Review • July 2012 Country news

Disability Research and funding. It is not anticipated Online video service Australia Development Agenda that that the national funding brings treatment continued sets out research directions, commitment of $10 million to children with principles and priorities. It will cover all the research disabilities details particular areas of directions and priorities. The inquiry for disability-related Agenda has been developed A new Government initiative research and identifies with the aim of influencing aims at providing children approaches to further the the direction of research with hearing or vision development of this research. relating to disability across impairment living in regional Five broad directions have a range of national research and remote Australia with been identified as priorities: initiatives and sectors. One the ability to talk from l Australian disability of the first initiatives under home to a specialist. The demographic profile the Agenda will be to invite Commonwealth Minister and trend information, the submission of research for Disability Reform and including access to social proposals. Submissions will the Parliamentary Secretary and economic inclusion need to include information for Disabilities and Carers, data; on how the research will recently launched Remote Hearing and Vision Services l Disability related social be translated into practice and economic inclusion and the potential outcomes for Children Initiative. The research, including a for people with disability. initiative aims at improving focus on human rights, Contact Information: health care services for participation in community [email protected] children with hearing and life, access to mainstream vision impairment living in activities and services, and New app increases regional and remote areas in Australia via an online broader systems change; access to theatre for video service. The Federal l Evaluations, reviews and hearing impaired Government is investing research to contribute Australians A $4.9M over three years to the evidence base to to deliver this initiative to improve service delivery A new service from Adelaide- 125 additional children and support options; based The Captioning Studio allows patrons to in regional and remote l Analysis of factors access theatre captions on Australia. This service is that support sector their iPhone, iPad or iPod supported by the National sustainability, sector Touch in selected venues. Broadband Network (NBN), development and improved The app gives Deaf and which is currently rolling out organisational capability; hearing impaired theatre high-speed internet access and goers the freedom to sit to 93% of Australian homes, l Research on the profile, in any seat in the theatre schools and businesses. experiences and issues to enjoy a captioned The NBN provides support affecting diverse and/or performance. Go-Theatrical for services such as these disadvantaged groups of Mobile can be purchased for that require fast internet people with disability such $1.99 from the App Store, connections, particularly as: Aboriginal and Torres allowing patrons to select in regional and remote Strait Islander communities; the captioned performance Australia where fast internet people from culturally they’re attending from a list access is less common than in and linguistically diverse of shows. The app means urban areas. backgrounds; women with that theatre patrons now disability; and people in have a choice of watching The initiative is detailed regional, rural and remote traditional open captions on in a media release (http:// areas. plasma or LCD displays fixed www.minister.dbcde. Under each of these broad to the side of the stage, or gov.au/media/media_ directions the Agenda closed captions on a personal releases/2012/007). identifies areas of inquiry device. which will be priorities for More information is available the allocation of research at: [email protected]

July 2012 • DbI Review • 31 Country news

Australia continued Defying Adversity Desert Trek

haryn Mitchell, who 17. Her sight has gradually Canning Stock Route is one is Deafblind, is about declined to less than five of the toughest and most Sto embark on the degrees of vision and she remote tracks in the world. It challenge of a lifetime, had dual cochlear implants runs from Halls Creek in the traversing the 1850km in her early 40s. Sharyn Kimberley region of Western Canning Stock Route in is a founding member of Australia to Wiluna in the remote Western Australia on the West Australian Usher mid-west region. With a total foot. Syndrome Support Group distance of around 1,850 In a feat that would and continues to be a strong km (1,150 miles) it is the demand the most from even advocate and role able-bodied athletes, the model for people 47-year-old Secret Harbour living with Usher grandmother and mother Syndrome. of three is preparing to let Always the her feet do the talking in intrepid adventurer, a bid to raise awareness of Sharyn is pictured Usher Syndrome. Sharyn above completing was diagnosed with Usher her first sky diving Syndrome at the age of jump, she took the plunge at Jurien Bay, Western Australia in April, 2012 and longest historic stock route said that it was: “The scariest in the world. The trek is now most exhilarating experience a popular but challenging of my life and I would do it four-wheel drive adventure again in a heartbeat! I now but has rarely been traversed have a new ambition - to do on foot. The track has never it solo one day which involves before been conquered by a at least 10 tandem jumps!” Deafblind woman. Sharyn’s But there are even greater Seeing Eye Dog Versace will challenges ahead for Sharyn also be the first service dog and her team as they to walk the Canning Stock prepare to trek hundreds of Route. Seeing Eye Dogs kilometres of shifting sand Australia (SEDA) is fully dunes, spinifex and deal with supportive of this amazing snakes and searing heat. The adventure and commented

32 • DbI Review • July 2012 Country news that Versace and all Seeing hours a day in preparation to give Versace a ride a few Australia Eye Dogs are exceptionally for the gruelling desert trek. hours a day so he can rest. continued fit and healthy and that “We need to get as fit as we The support person will also Versace would do well. He is can because it is going to be carry the extra water and incredibly loyal and so closely a huge physical challenge. supplies that the ladies will bonded with Sharyn that he In some areas the track is need; replenished every 4 would follow her to the ends rough, narrow and winding, days as their trekking trailers of the earth. while in others it goes over load is depleted. The outback odyssey from repeated sand dunes.” Why do such a long and Halls Creek to Wiluna will Sharyn said “the snakes are potentially dangerous take the team up to 10 the things I am most worried trek? Apart from the sheer weeks, trekking on average about because I won’t be challenge and consequent 25-30 kilometres per day, able to see them.” satisfaction of conquering crossing some of the world’s Trekking alongside Sharyn such a large feat, Sharyn most inhospitable country. (47) and Versace will be Pam and her dedicated team The conditions will be so (47) Sharyn’s sister Lauren want to raise awareness harsh that Versace will walk (43), Anna (47) and also and funds to support only small sections of the Greer (40), a senior instructor people living with Usher route, leaving Sharyn to with Seeing Eye Dogs Syndrome and Dual Sensory rely on a shoelace tied to Australia who will help to Loss. Senses Foundation her finger and tethered to ensure Versace’s health and is fully supporting Sharyn another member of the team safety during the trek. They with this venture. For more to help her navigate the have a support person Greg information regarding the track. The women will take Webb, Laurens husband, trek, to be updated with turns to pull three specially who will travel ahead, within their progress and to follow made trailers each holding 45 radio distance of the group this inspiring journey, go to: litres of water and personal in a four wheel drive in case http://defyingadversity. items. They are training three of an emergency and also com/

Left to right: Sharyn Mitchell, Greer Gerson, Anna Bottle, Pam Armstrong, Lauren Mitchell; front: Versace

July 2012 • DbI Review • 33 Country news

Brazil II Virtual Ibero-Latin American Forum on Deafblindness and Multiple Disabililties: Linking knowledge for inclusion- discovering possibilities and building networks. In Honor of Michael Collins

himsa (Educational and families of people with Bove, Isabel Amaral and AAssociation for Multiple deafblindness and multiple Carolyn Monaco; Rubella Impairment) and Grupo disabilities. issues: Stan Munroe; CHARGE Brasil (Deafblind and The themes included: Syndrome: Tim Hartshorne Multiple Sensory Impairment Education (Inclusion in and Veronika Bernstein; Network) hosted the 2nd Regular School; Guide- Pediatric Rehabilitation: Jude Virtual Ibero-Latin American interpretation; Intervenors; Nicholas; Advocacy: Ricard Forum on Deafblindness and Co-teaching; Universal Lopez; Arts and Culture: Multiple Disabilities, together Design for Learning; Assistive Gill Morbey; Music: David with partners: University Technology and Accessible McCluskey, and Drama Center of Ji-Paraná (CEULJI/ Resources; Orientation (promoting independence ULBRA), Lutheran University and Mobility; Transition and communication): Jon of Brazil and Perkins to Adulthood and Tactile Reid. International/Lavelle, 28 May Communication) We also give our sincere to 30 June 2012. ‘Linking thanks to those who made Knowledge for Inclusion: Health (CHARGE Syndrome; this a fruitful and rich event: Discovering Possibilities & Usher Syndrome; Congenital Gloria Gil, Ximena Serpa, Building Networks’, the title Rubella Syndrome; Pediatric Mariela Pacheco, Florencia of the second forum, was in Rehabilitation; Neurological Trujillo, Marcela Toscano, honor of the late Michael and Cortical causes) Marcela Quiroga, Carmen Collins, past president of Guerrero, Sandra Polti, Paula DbI and Director of Perkins Family (Transition to Perez, Alejandra Grzona; International. Adulthood; Collaborative and our Brazilian colleagues Sixty-five presentations Teams; Associations and Iolanda Utuari, Susana Aráoz, were available to download Supporting Networks) Dalva Rosa Watanabe, Maria free of charge to the more Piedade Resende da Costa, than 460 participants who Research and experience Renata Gramani, Sandra registered from Argentina, reports (Education, Family, Mesquita, Silvia Estrela, Brazil, Chile, Colombia, Culture, Sports, Leisure and Denise Teperine, Marilene Ecuador, Mexico and Peru. Health) Souza, Marcia Lopes and Each forum was enriched Daniela Forchetti. We through the exchange We wish to acknowledge also thank the many who of experiences from the the renown experts who presented the practical participants from the so kindly took the time part with reports on their different countries who had to prepare and make experiences from all parts of the opportunity to express presentations in the Brazil and other countries in their opinions, problem solve following categories: Tactile our beloved Latin America. and exchange points of view. Communications: Barbara Finally, special thanks to our All this made it possible to Miles, Paul Hart, Bernadette secretary Ines Igino for all her expand our networks and van den Tillaart and Aase dedication and patience. discover new possibilities Endrensen; Transition and for connecting together all Families: Steve Perreault, Sincerely the knowledge available to Joseph Shiroko, Paula Shirley Rodrigues Maia and improve the quality of life for Rubiolo, Graciela Ferioli and Vula Maria Ikonomidis – children, adolescents, adults Aurea Soza; Inclusion: Maria Forum Organizers

34 • DbI Review • July 2012 Country news

Greek Deafblind Association celebrates 20 years Greece

Toula Matsa and Georgia Pappa report

riends and members Fof the Panhellenic Deafblind Association gathered together for a wonderful evening on May 28, 2012 to celebrate Deafblindness Week and the 20th Anniversary of their association. The event took place at the Petreza Tower, Spaton- Pikermi region near Athens, honoring the memory of Mike Collins (Director of Hilton Perkins Program International) and Lex Grandia (President of the Anna narratating the folk tale World Federation of the Deafblind WFDB). Attendees remembered the great by Anna Stamatopoulou initial objectives were to contributions by Michael and a performance by the create a deafblind centre and Lex to the work of Coucoubayan Circus, a group staffed by specialized the association, as well of three actresses. personnel that would as the progress that the The Panhellenic Deafblind operate both as an education organization has made over Association was founded facility for deafblind children the past 20 years. in Athens in 1992. This is and a vocational unit and Guests were treated to the the only organization in residence for adults with narration of the folk story mainland Greece dealing deafblindness. While the ‘The Blind and the Hunter’ with deafblind people. Its residential service has not yet been developed, we are pleased to report that the Ministry of Education has established a school and vocational program for young and adolescent deafblind students.

Toula and Alegra assist Ilias

July 2012 • DbI Review • 35 Country news

Canada “Embracing the Dragon”

the theme for Canadian 6th Spirit of Intervenors Symposium

he DeafBlind Coalition Tof Ontario, a network of Individuals and organizations dedicated to the sharing of information and promotion of awareness of deafblindness and intervention, hosted their 6th Spirit of Intervenors Symposium March 5th to 7th, 2012 at the Sheraton Parkway Hotel in Richmond Hill, Ontario. “Embracing the Dragon” was the perfect theme fashion. There is no one more Approach; The Importance of for this year’s symposium. passionate about their work Teaching Healthy Sexuality; According to the Chinese than an Intervenor. Technology: Next Level Zodiac, the year 2012 is This Symposium, like in Accessibility for the the year of the Dragon. previous ones, was Deafblind; Transitions; and In ancient China, the specifically designed for Sensory Exploration Arts dragon represents emperor Intervenors or those in (SEA) Explore, Express and and power. Today it is a supervisory role who Enjoy: Creative Expression the ultimate auspicious work with people with Through the Arts. The symbol symbolizing success deafblindness. The benefits conference closed with a and happiness. Dragons of these annual symposia keynote titled “Taming symbolize such character include networking, the Dragon and Relieving traits as dominance and professional development, Stress with Humour” by ambition. They’re driven, learning new practical popular comedienne and unafraid of challenges and strategies and hearing about motivational speaker Judy willing to take risks. They’re the latest information about Croon. passionate in all they do key issues in the field and The symposium this year becoming more empowered. drew 300 delegates largely Paul Hart and they do things in grand This year’s 3 day symposium from the Province of Ontario, included a plenary session with some travelling from highlighting the “Embracing New Brunswick, Manitoba, the Dragon” theme, a British Columbia and keynote address from Paul Scotland. Participants Hart (Sense Scotland) titled included students, “The Landscape of Touch” Intervenors, interpreters, and numerous workshops. administrators, and teachers Some examples of the involved in deafblindness. 24 workshops included: Personality Dimensions; Susan Manahan Embracing and Engaging DeafBlind Ontario Services in a Total Communication

36 • DbI Review • July 2012 Country news

Services for Deafblind Persons in Hong Kong China

Introduction people in Hong Kong In Hong Kong, there is a beginning in 1992. From minority group with dual September 1995, this sensory impairment in the programme has commenced society that is often being with support from the Hong neglected or their needs Kong Community Chest have been misinterpreted in providing rehabilitation the provision of supportive training free of charge to and rehabilitation services. people aged 16 and above According to the March with dual sensory loss. Living 2012 Statistical Report of skills training for these the Central Registry for clients is provided at the Rehabilitation in Hong Kong, Rehabilitation Centre, the 159 people are identified Morning Glory Day Activity Centre cum Hostel of the with hearing and visual Resource Centre for the Resource Centre HKSB and for those living in impairment, or Deafblind. Deafblind. Other training for the Deafblind the community, according to However, this figure may in communication is also their individual needs and not be reflecting the actual provided. potential. number of people with l Orientation & Mobility HKSB also joined hands deafblindness in Hong Kong is provided by the with various professions to as the registration is on Rehabilitation Centre. develop services in Hong voluntary basis. Other types of training Kong for deafblind persons For these deafblind include home management of all ages. A Deafblind people, their dual sensory skills, computer skills and Rehabilitation Programme loss has created much teaching Braille. greater difficulties for their Advisory Committee was formed in 1999 to start a l Day care training and daily living. Unfortunately, residential services are Hong Kong Rehabilitation ‘Pilot Project on Training the use of Tactile Signs provided by the Morning Services does not provide Glory Day Activity Centre any assistance for this special for Deafblind Persons’. The Advisory Committee cum Hostel to those minority group. deafblind with multiple These deafblind people members were experienced professionals from Ebenezer disabilities or mental could only receive services challenges. offered by the deaf or the New Hope School, Caritas blind welfare organizations. Jockey Club, Lok Yan School, Resource Centre for Although the number of Hong Kong Society for the deafblind persons is small in Deaf and Hong Kong Society the Deafblind Hong Kong, their particular for the Blind. The first-ever Resource needs cannot be ignored; Centre for the Deafblind in Chinese Tactile on the contrary, we must Rehabilitation Hong Kong was established Sign Language address their needs to help Training Programmes in 2006 to provide supportive Training Manuals them to integrate into the Three major aspects of community. individual training are provided at three different Rehabilitation centers of the Hong Kong Services Society for the Blind to In view of the service gap, deafblind clients (ages the Hong Kong Society for 16 or above) living in the the Blind (HKSB) started community: planning for a rehabilitation l Tactile sign language programme for deafblind is provided by the

July 2012 • DbI Review • 37 Country news

China services and consultation to educational talks and the signs used by hearing continued deafblind persons and their workshops; community impaired persons in Hong family members. The Centre’s education liaison, various Kong, with modification mandate also included volunteer programmes and from the Makaton (see teaching professionals and public education. www.Wikipedeia.org/wiki/ rehabilitation workers to Makaton) which are signs facilitate the rehabilitation Development of a used for those people with process and strengthen the Chinese Tactile Sign an intellectual disability. living skills of these disabled Language (HK) The basic parameters of sign individuals. At the time of formation include handshape writing, the membership of We are honored to have movement, location and the centre was 137, of which Rev. Dr. Cyril Axelrod as the orientation, with facial 59 were deafblind persons Honorary Consultant of our expression an optional ranging from ages 9 to 95. Deafblind Service. Rev. Dr. supplement. The signs are Cyril Axelrod is deafblind conducted hand-over-hand Services provided by himself. Ever since his visit on a one to one basis. to the Hong Kong Society the Resource Centre for the Blind, he brought Standardization of for the Deafblind his worldwide experience The centre provides working with deafblind Chinese Tactile Sign information on various people to foster the Language (HK) resource materials to development of deafblind With the valuable meet the special needs services in Hong Kong. With experiences gained from for learning, daily living his help the Chinese Tactile the ‘Pilot Project on Training and social adjustment of Sign Language (HK) was the use of Tactile Signs for deafblind people in the developed since 1993. Deafblind Persons’, teaching different age groups. These Tactile Sign Language techniques were published services include: a hotline is a different modality of in the first training manual enquiry service; an adaptive communication. Basically, ‘Deafblind Training Manual’ 5th Anniversary aids consultancy program; the tactile sign language in 2003. At that time, about Celebration of community services referral; system in the chinese 250 vocabularies of Chinese the Resource a resource library service; language (HK) is based on Tactile Sign Language were Centre presented in the first Chinese Tactile Sign Language Vocabulary CD-ROM. Through consolidating our experience of working with deafblind people over a number of years, we published in 2010 ‘Communication without Barrier – Deafblind Training Manual’ with a DVD. This publication includes a Chinese tactile sign language (HK) vocabulary. This manual aims to increase the understanding of the various needs of deafblind people through interviews with deafblind persons, case studies on training and sharing by professionals working in deafblind services. This informative

38 • DbI Review • July 2012 Country news manual includes resources and equipment available in Hong Kong to help deafblind people integrate in local society. In the DVD, 300 new tactile sign language vocabularies, 50 demo sentences and conversations are presented; as well as, with the approval of Deafblind UK, ‘The Deafblind Manual Alphabet’. The study and development of Chinese Tactile Sign Language (HK) is ongoing, with the intent to build a communication method that is universal to local Chinese deafblind communities.

Professional Development The centre organizes local and overseas exchanges to Course for Communicator/ are ultimately to enhance Tactile enrich the knowledge of Guide for the Deafblind deafblind persons quality of communication our staff as they develop (Level 1 – Basic) was life by: supporting deafblind quality deafblind services. designed in 2010.This course clients to live independently Two exchange tours to covers such topics as: the and maintaining their Taiwan (Tai Chung-2010 and definition of deafblindness, dignity; enhancing their Kaohsiung/Tainan-2012) communication methods, communication skills, and were recently organized. tactile sign language and educating the public to The Centre staff also attends orientation and mobility become more aware and overseas conferences to share skills. Over 60 students have accepting of deafblind their experiences. A paper completed the course and people.HKSB will continue titled ‘The Development undertaken the assessment. to work hard to serve of Chinese Tactile Sign Intermediate and Advanced deafblind people in whatever Language in Hong Kong’ was Level Courses will continue ways they need. We intend presented at the 10th Asia to run to further develop to continue to share our Pacific Congress on Deafness the professional skills of experiences in Hong Kong in held in Bangkok in August communicator / guides for the future. 2009. Exchange activities also deafblind people in Hong included two friendly visits Kong. Contact Us from Japan Deafblind service organizations – ‘SMILE’ from The Hong Kong Society for Conclusion Osaka (September 2009) and the Blind Resource Centre for Japan Deafblind Association The Hong Kong Society the Deafblind (January 2011). for the Blind has been Room 822, 8/F, West Wing, actively involved in public 248 Nam Cheong Street, Development of awareness and providing Shamshuipo Kowloon, rehabilitation training and Hong Kong. Professional Training various areas of assistance Email: [email protected] for the Public to the deafblind community Tel: 852 – 3723 8873 With the advice of Rev. Dr. in Hong Kong since 1992. Fax: 852 – 2777 6559 Cyril Axelrod, a Certificate The goals of our service

July 2012 • DbI Review • 39 Country news

Guatemala FUNDAL celebrates the inauguration of their new building

n February 22, O2012, FUNDAL, the Guatemalan Foundation for Deafblind Children, held its inauguration ceremony for the launching of their new building, the Center for Learning and Resources. It is located at 1ª Calle 0-20 Steve Perreault and Diana Bonilla Zona 1 de Mixco, Colonia Lomas de Portugal, Carretera FUNDAL and his intention to Perkins International. Steve Interamericana, Guatemala. negotiate additional support and Graciela were visibly We were honored by the from the government of moved by FUNDAL’s great presence of the Mayor of Guatemala. We also had the achievement and they Mixco, Otto Pérez Leal, who honor of being accompanied delivered a message full of by Steve Perreault and joy and encouragement. Fundal’s gave a speech in which he Ribbon Cutting reaffirmed his support of Graciela Ferioli, representing This project was made Ceremony possible thanks to the efforts of Christian Blind Mission (CBM) with the support of the European Union. In this activity, we also had the presence of Sandra Weppler and Diana Acuña from CBM, who directed some words to the guests, and who unveiled the plaques recognizing all the organizations that contributed to this work. Those present were brought together in the celebration, celebrating with applauses, mariachis, catering, wine, and above all, sharing their joy for what this new project represents for our country.

Diana Bonilla [email protected]

40 • DbI Review • July 2012 Country news

You’re hired! Kenya

Finding work placements in Kenya

hen well-qualified There are five schools Students often graduate Wdeafblind students and colleges in Kenya that “ leave school or college accept deafblind students highly qualified and ready in Kenya many find from all over East Africa. The themselves on the job teachers work in difficult for the workplace” scrapheap. Maggie Korde, conditions and often with Programme Advisor at Sense very little support. But all graduate highly qualified International, describes a believe in the potential of and ready for the workplace. new scheme to help put this the deafblind children they Unfortunately for the right. work with. In many cases, majority of these young In January 2011 Sense the students arrive at school people, life after school International’s East Africa under-nourished, isolated, hasn’t provided the team undertook a planning neglected and with little opportunities they hoped exercise in Kenya, looking at confidence. But with the for. Teachers told us of what services exist to provide commitment of the teachers visiting students a few vocational training for and their faith in the months after graduation, deafblind students. students’ ability, they often finding them living in poor conditions, where they were not being properly cared for. Most were suffering from depression and many had other conditions relating to neglect. When staff did find the students working, they were often being exploited and were not being paid what they should. “It is awful to see them return home to nothing” One teacher we met at Kerugoya School, Joseph Muturi, told us “It is my job and my honour to teach these young people so that they can meet their full potential and work like everyone else. The problem is that others, including their families, do not see this potential, and it is awful to see them return home to nothing.”

July 2012 • DbI Review • 41 Country news

Kenya continued

Our East Africa team set current figure is less than with the schooling and about putting a project 10%) vocational training of together that would l 90% of students deafblind children, as they address these problems. graduating from vocational have committed to under With the support of two UK training schools in Kenya recent legislation. businessmen, Sunil Shah and will be found work The project also improves Terry Williams, this is now a placements or will be the quality of the training reality. assisted with a business and facilities in the five start up (this is currently vocational units and in The project’s aims over less than 10%) the five other schools with the next three years l 300 families or guardians of deafblind primary units in are: deafblind children enrolled the country. in vocational training, A vocational teacher, at l 90% of deafblind children will take part in school one of Sense International’s will be enrolled in visitations and awareness partner schools, told me how vocational training schools raising programmes excited he is about ensuring in Kenya, where they this project is a success, “I will be matched with an l 25 families will be trained just can’t believe it. I want Apprentice Trainer (the in family transition and home support in Year One, to start right now! I have so with this figure increasing many ideas – the first thing according to advocacy I want to do is an exhibition of their work in each of the 90% of deafblind efforts in Years Two and “ Three students’ communities – we’ll show them what they are children will be enrolled l An Advocacy Officer (hired for this project) will take capable of!” in vocational training the needs of the schools to district and national First printed Talking Sense, schools government asking them Summer 2011 ” to take on costs associated

42 • DbI Review • July 2012 Country news

The first ever curriculum for early Romania intervention in Romania

he major consequence covering such themes as: Tof deafblindness leads to Communication, Sensory the necessity for intervention and Cognitive Education, as early as possible in the Orientation, Mobility and development of the child. General Motor Development The involvement of an early and Emotional and Social intervention specialist and Development, is a precious different specialised services instrument to be used by has implications for the current and future early family. The work of the early intervention specialists intervention specialist with in Romania. It has been the multisensory impaired submitted to the Ministry of child involves one-to-one Education, with the purpose activities, the aim of which is to be accredited as part of to reach maximum potential national legislation in the for the child with this field of deafblindness. disability. The curriculum has been After numerous developed for specialist meetings, the Curriculum teachers in the field of for the Provision of Early deafblindness involved in Intervention Services has early intervention activities been finalised. It is a complex with children from 0 – 3 document, developed by years old. However, the professionals who are both suggestions in this curriculum national trainers in the field can be of great assistance of deafblindness and early for parents as well as for Romania for the benefit of intervention specialists - all persons involved in early intervention workers Gabriela Jianu, Eva Oprea the educational process and parents working with and Carolina Biro, as of multisensory impaired babies and very young authors. Mihaela Moldovan, children. children with this disability. Stela Todea and Andrea We are proud to say that Hathazi have contributed as this is the first ever document consultants. The curriculum, designed and published in

Eva Oprea Gabriela Jianu Carolina Biro

July 2012 • DbI Review • 43 Country news

Ireland Deafblind Ireland ��������� ������� Ges Roulstone reports:

eafblind Ireland held its and focused on the need in the field of deafblindness: D3rd annual conference Ireland to develop stronger Dierdre Leech and Heather on Saturday 25 February links between professionals, Coulson. 2012 at the campus of families and deafblind The conference ended with the National University of people themselves. an impressive presentation Ireland in Maynooth, County DbI president Gill from deafblind pianist and Kildare. The conference Morbey made this her first music teacher Orla O’Sullivan. title was “Building Bridges” international engagement The conference gave since becoming President in Deafblind Ireland the 2011 and spoke with great opportunity to launch energy and commitment Ireland’s first professional from her dual perspective as a course in deafblindness. This mother of a deafblind son and course, aimed at improving CEO of a large organisation the skills and insights of providing serves to deafblind different professional groups, people and their families. will start this spring (2012) She was followed by and will run on a modular Megan Mann of Sense UK basis over 5 weekends who delivered one of her throughout the year, at the stimulating and engaging University in Maynooth. lectures on communication. Ges Roulstone The conference also heard Chair of Trustees presentations from Irish Deafblind Ireland professionals working in [email protected]

First Announcement 10th Helen Keller World Conference (HKWC) and 4th World Federation of Deafblind (WFDB) General Assembly 2013

his represents the first The meetings of the the date of the General Tannouncement and General Assembly are open Assembly. The agenda and all invitation to attend the 10th and consist of deafblind relevant documents related HKWC and 4th WFDB General representatives representing to the General Assembly will Assembly planned for the the national members of be sent to all members by Manila area, Philippines, WFDB, as per constitution the Secretary General at least October/November 2013. article 5. four (4) months before the We are at this time in Information about date of the meeting. conversations with hotels in nominations and nomination We welcome you all to the Manila area about costs forms for the different the 10th HKWC and the 4th and other details etc. We will positions in WFDB will be sent WFDB General Assembly, have further information out in later announcements. 2013. about date, venue, Applications and motions to accommodations, conference be considered by the General Best regards fees and program for this Assembly must be received Geir Jensen world conference in our 2nd by Executive Council at least Secretary General WFDB announcement. twelve (12) months before [email protected]

44 • DbI Review • July 2012 Shelter from thesubhead storm

Shelter from the storm

support network way I do.’ A breathing space for mothers Through our work as In other social situations, A with acquired consultants we were often the women have to use a lot deafblindness is offering a asked: ‘How do women with of energy to explain their group of women a safe place acquired deafblindness cope situation to other people. to share their concerns and with their roles as mothers, And many times it doesn’t grow in confidence. Else wives and colleagues?’ We actually help. Because Marie Jensen and Anette Rud didn’t have an answer to how can other people Joergense from Denmark, this so we set up a network really understand their who are consultants for group. At first, the women situation? In the group, the people with acquired met frequently to get to communication is on their deafblindness, explain how it know each other better; terms. Everyone knows what works. now they meet every three the others need. So they Nina, a young mother with months and communicate can relax, and some of them two small children, has Usher regularly by email. feel that, in the group, they 2. Since 2007, she has taken Several of the women can be themselves without part in a network group with describe the group as a simply focussing on sight and four other mothers with turning point in their lives. hearing. severe hearing and vision ‘After I met these other Nina says: ‘Being in the impairments. ‘If I didn’t women I certainly feel less group is a relief and a great have the network group I lonesome,’ says one. ‘I feel breathing space. When I go would only be able to talk to empowered by the sense of home afterwards, I can tackle professionals like you’, says belonging. It’s nice. I feel a my hard everyday life. Not Nina. ‘That means the world sense of security knowing an impossible life, but a hard to me and I couldn’t live that others are in the same one, and then I know that without it. It’s nice to be with situation.’ we’ll see each other again people who feel the same

July 2012 • DbI Review • 45 Shelter from the storm

…some of them feel that, in the on me when I have revealed After one meeting, one of “ my secret?’ she asked. the group members texted group, they can be themselves That started a useful me: ‘I never thought, that discussion where each person I should be so lucky and without simply focussing on described their difficulties participate in such a good sight and hearing in telling others about group. I feel safe when I’m ” themselves. They all know together with the group, this feeling. even though sometimes I cry It is also important to and sometimes I laugh.’ soon and share experiences.’ say that the women are at Some facts about the group The five mothers learn different stages of adjusting l The youngest woman is 35 from each other – which to their disability. These and the oldest 50. gives some of them more differences also encourage courage and self-confidence. l Two of the women have dialogue in the group so When someone hears what small children. that the women learn from another woman can do, then l Most are diagnosed with one another. Before the she thinks, ‘I can also do Usher 2. school meeting, some group that’. l One woman uses sign members emailed Helen to ‘Another thing I’ve learnt language, although she can offer her support – and then from the women in the communicate with speech she was able to talk about group is their optimism, if the conditions are right. it at the group afterwards. which I admire very much,’ l Some have known their Strong bonds are formed says Nina. ‘Time and again, I diagnosis for many years, between the women think about it in my everyday others were diagnosed life. If they can manage, then more recently. . The role of the so can I.’ l Three members have a professionals disability pension, two have Themes in the network In the networking group all a part-time job, working group the members are equal, and between 20-25 hours a our role is to facilitate the In the group, the women week. group process. At first we talk about many different were responsible, together problems related to living Else Marie Jensen and Anette with the group members, for with a hearing and vision Rud Joergense, setting the framework of the impairment. For example, Consultants, Centre for Døve, meetings, but increasingly some find it difficult to tell Åbyhøj, Denmark. the women take on this role other people about their For more information contact themselves. disability. They are afraid of [email protected]; www.cfd.dk other people’s reaction. At one meeting, ‘Helen’ talked about her fears of meeting the parents in her daughter’s new school. The ‘No one knows what my everyday life is like and how teacher wanted each parent much energy I spend on picking up my children. Not even to introduce themselves and my husband knows that. He understands a lot – but not Helen wanted to tell them 100%, and neither do you professionals or my friends. It’s about her vision and hearing much easier in the network group. In the networkgroup problems. She needed the we know how each other feels. The other women in the other women’s advice to group don’t need long explanations but just nod and say: prepare her introduction, I know how you feel, when I’m telling about situations because it is hard for her from my everyday life.’ (Nina 36 years) to explain her problems to strangers. ‘How will they look First printed in Talking Sense, Summer 2011

46 • DbI Review • July 2012 Network News

Acquired Deafblindness Network Liz Duncan Acquired Deafblind Network Email: [email protected] Website: www.adbn.org (ADBN) CHARGE Network Liz Duncan reports: Andrea Wanka Tel: ++496251939797 Fax: +4916090309876 Email: [email protected] he ADBN Co-ordinating group met at the end of Communication Network March 2012 to continue Ton Visser T Email: [email protected] planning for the Conference in Lund Sweden, November 7-10, Employment Network 2012. Our main task was to review Diana Bonilla Sinibaldi Tel: +(502) 52089291 the workshop abstracts submitted Fax: (502) 24347934 and decide which ones would be Email: [email protected] accepted. European Deafblind Union We had an amazing number of Ricard Lopez Manzano high quality submissions (50), the Tel: +34-678-712-619 highest ever for this conference. Fax: +34-678-782-600 Since only 30 places were available, Email: [email protected] some hard decisions were required. Website: www.edbn.org Consequently, because of the Latin America Network quality of the submissions and Sandra Polti the range of subjects offered, the via myself or any member of the ARGENTINA group made the radical decision coordinating group. Email: [email protected] to alter the programme to enable And on the subject of the Outdoor Network 36 different workshops to be Coordinating group, there have Joe Gibson held. Since some of the abstracts been several changes to the Tel: 4+4 (141) 429-0294 submitted complemented the Email: [email protected] group over the last 18 months, so planned plenary sessions, we I thought I should advise who we Rubella Network have made changes where it are. Nancy O’Donnell was possible to enable different Tel: + 516-944-8900 x326 Liz Duncan, Chair – UK; Else Fax: +516-944-7302 presenters to work together within Marie Svingen – Norway; Else Email: [email protected] plenary presentations. Marie Jensen – Denmark; Henrik The Coordinating group is also Siblings Network Brink – Sweden (Henrik is leading Sabine Kersten looking at ways of encouraging the local planning team for the Tel: +32 476 612 879 more networking, both during conference); Christine Aktouche – Email: [email protected] the Conference and outside France; Chrétienne van der Burg – Social-Haptic Communication Conference times. There will be The Netherlands and Kees Kuuyper Network some new ideas presented at the – The Netherlands Dr. Riitta Lahtinen & Russ Palmer Conference, but we are also very We all work within Acquired Tel: + 358 40 522 4201 keen to hear from anyone who has Deafblindness, but have different Email: [email protected]; ideas about this, or who wants to experiences and work roles, [email protected] do something, especially outside which means that we can bring Tactile Communication Conference times. lots of different knowledge and Working Group Perhaps you have some new understanding to the network – or Bernadette Van den Tillaart ideas about work within Acquired at least we hope so! Tel: +1-740-426-6728 Deafblindness that you want Fax: +1-740-426-6728 We hope to meet some of you in Email: bernadettevandentillaart@ to explore with someone from Lund In November. tiscalimail.nl another country, or you would like to know who is working on Usher Study Group Liz Duncan, Chair, ADBN Emma Boswell a particular topic! If so, please do Coordinating Group Email: [email protected] get in contact with the Network [email protected]

July 2012 • DbI Review • 47 SubNetwork head News

Communication Network Ton Visser reports on some of the discussions from the DbI Communication Network meeting, March 21-24, 2012

will concentrate on the following be an update of the 4 books on activities. Communication and Congenital Deafblindness previously Masters Degree Program published. We hope to do this The Network group agreed that in cooperation with the Nordic organizing a high standard Masters Centre for Welfare and Social Future of the Degree Program in Congenital Issues in Denmark. In this new communication network Deafblind Communication through book we will try to make insights The group discussed the history the University of Groningen from the Congenital Deafblindness of the Network and the impact will remain as one of the main field more available to the other of the fact that Jacques Souriau, priorities. This initiative forces disability fields, hence the title Inger Rodbroe and Ton Visser the continuation of discussions ‘Learning from Persons with are no longer connected to an about theoretical frameworks and Congenital Deafblindness’. We organization because of their concepts. Furthermore, it allows learned at the meeting that some retirements. many other people the opportunity people had problems ordering one The group agreed that from to study these concepts and expand or more of 4 books mentioned the beginning, the strength upon them through preparing their before. Please contact Ton Visser and impact from our network Masters theses. if you are continuing to have on the field of congenital problems ordering these books. deafblindness has been through Supporting the Alumni Developing an open access the development of knowledge, Network including creating theoretical journal frameworks with regard to An Alumni Network has been set up for all students who Another part of the meeting communication with persons with included discussion about congenital deafblindness. Everyone have finished their Masters in Congenital Deafblind producing an ‘Open Access agreed that these have had direct Journal’. This part of the meeting implications for our daily practical Communication at the University Groningen. At their first meeting was very well prepared by work. Reading literature, analyzing Ineke Haakma, PhD student at video’s and inviting experts on March 22, the Alumni Network defined their purposes and how to Groningen University under the from outside our field to discuss supervision of Marleen Janssen. perspectives and concepts with achieve their goals. I will mention a few of them: to bring new Ineke has agreed to work further them have been the main activities on this project based on her of our group. developments and theories to their working organizations; to stay in investigations to date about these Having said that, we decided to types of journals. We intend to return to our roots and original close contact with the University of Groningen; to organize and have the first edition prepared strength - that of developing before the Conference in Lille next knowledge with clear practical contribute to various seminars and pre-conferences/seminars, etc. The August.. implications for daily practice; The Network will continue to continuing to study and further Alumni members organized a very impressive seminar with a lecture focus over the the next period clarifying our perspectives and on the content of the new concepts while analyzing video’s. from Prof. H.J.M. Hermans, who will be one of the plenary speakers book. Please do not hesitate to This renewed focus means that contact us if anyone wishes more some of the activities we started at the DbI European conference in Lille next year. information, has any questions to do or to think about for the or would like to provide any future (i.e. organizing conferences, comments. On behalf of the Publishing a new book implementing courses, etc.) will members of our network, I remain: not be continued. In line with We are planning to produce a new Ton Visser these discussions, the Network ‘state of the art’ book which will [email protected]

48 • DbI Review • July 2012 Network News

European Deafblind Network (EDbN) Ricard Lopez reports:

DbN is the European European Disability Forum (EDF) of these reasons give us cause to network of organizations of We are part of a group of experts celebrate. Edeafblind people, parents, on the European Union Structural relatives and professionals. In Funds. This is beneficial because European Deafblind Union – 2011, the EDbN has been able to it means we have some influence Agreement of understanding. have a strong impact on important on its budgets and management We are looking forward to areas related to deafblindness and (for the period 2014 to 2020), and working more closely with our disabilities in Europe. Examples are are able to acquire knowledge colleagues within EDbU. listed as follows: and establish relationships. We participated in various seminars World Confederation of Parents of about accessibility. As members of Deafblind Persons – Agreement of EDF we have experience in many understanding subjects at the European level. The preferential agreement with the recently created Confederation European Platform of Deafness, of parents is another reason to Hard of Hearing and Deafblindness celebrate 2011. We have become involved in the creation of this platform, which EDbN is being revealed as an will offer us closer relationships excellent working tool for with colleagues in this area with our collective workings at the access to high quality information. European level. It will also provide us with direct access to the Disability Intergroup [email protected] of the European Parliament giving us greater lobbying strength. All

CHARGE Network Andrea Wanka reports:

his is a short update on what can make this happen! We have has happened since our already some thoughts about Tlast report. As the CHARGE the content, but as we are not Network representative to the used to planning conferences, we DbI Board, I was pleased to attend must keep the formal aspects and the meeting in New York, May questions in mind. If members of 4-5, 2012. Many strategic aspects the Network or others have any were talked about during this ideas to share with us for this meeting, including our Network’s preconference, please let us know. plan to host a preconference on If anyone is interested in joining this email. For your information, CHARGE Syndrome in advance of the conference and in particular the website (www.dbicharge.org) the European DbI conference in contributing with a presentation, is still a work in progress. Lille, August 2013. A task group please contact the Network consisting of Martha Majors, Gail through this email: andrea- Contact information: Deuce and myself will speak about [email protected]. Those [email protected] the details for this event during interested in becoming a member [email protected] this summer. We hope that we of our network contact us through

July 2012 • DbI Review • 49 SubYoga head

Yoga: Lead us from darkness to light

Do you hear with only It was just yoga. I practice experiencing. Have you ever your ears? Do you see it. I teach it. What was the closed your eyes during your with only your eyes? big deal? I realized that I practice? What happens to had never been around a your balance? What happens How can you chant deafblind person before; to your mind? Sometimes a mantra if you can’t when was the last time I was it’s scary, overwhelming and hear? How can you around a ‘disabled’ person? sometimes it can take you practice yoga if you – it was the unknown that to a place of surrender and can’t see? was getting to me. This expansion of an unknown wasn’t going to be just any warm vastness wrapping its These are the types of yoga class. I was going to arms all around you in all the questions I asked myself be practicing alongside right places. before attending a yoga class someone who couldn’t see The class ran so smoothly. for the blind and deaf. Bente me or hear me. My limited, There were no unusual Ramsing invited me to her scared little brain couldn’t interruptions, there were yoga class in Copenhagen fathom it. no outbursts; there were in February of 2012. The As I got into a simple just a few instances when I moment I stepped into crossed-legged position became aware of the soft her classroom I got a little on my mat, my thoughts muffled sound of moving nervous. Why was I nervous? continued to go on and on. hands – fingers coming What was this class going to together, motioning, be like? How was it going creating a silent language. It to feel practicing next to a was Bente communicating blind and deaf person? How with the interpreter and her was she going to know what student. They used tactile to do? Could she feel my sign language. It blew my presence? Was she scared? mind. My heart softened. My How would someone like me mind humbled. My Universe address her? Communicate increased in size. with her? The ninety-minute Sign for yoga class started with a short I realized that Bente had meditation – all of our eyes invited me into a new world. closed, all of us in the dark. This is her world where I was right next to Bente’s all students regardless of student, who sat next to her blindness or deafness were interpreter. Bente sweetly seen as individuals. She led us through a series of delicately instructed all of sun salutations, standing us (there were other non and sitting poses until we disabled students in the class) found our way into final to find our own potential. resting pose. I experimented Bente, with her soft tone, her a few times by closing my open heart and her gentle eyes during a vinyasa – guidance invited us into an trying to feel if only a tiny essence of yoga, an essence magnitude of what this other of oneness, no matter if we student could be feeling, could see it or if we could hear it.

50 • DbI Review • July 2012 subheadYoga

When Bente Met Ella has changed a lot for the Bente Ramsing, who has better. In the beginning, it been working with deafblind felt nearly impossible to do people for twenty-five years, postures, but it slowly got became a certified yoga better and better. I used to teacher 1½ years ago for the go to a chiropractor, but it sole purpose of wanting to didn’t really help. I feel a share this practice with the lot better than before. I feel deafblind community: and stretch my muscles like “A couple of years ago I I never have before and the was working on a project in breathing helps a lot.” Nepal. There was a school Bente says that Ella’s overcoming a lot of fear. for deafblind children. I posture has gotten so much Bente said she dreams of wanted to see how they better and that her heart starting a new revolution – were teaching – we found area is much more open. to bring people together in that the students there were She said that every time Ella society no matter who they learning yoga and practicing leaves the class, she is shining. are: every morning. I noticed that I have to agree. Ella was all “If you meet someone like those children’s bodies were smiles and beaming at the Ella, it’s hard to understand much better than the Danish end of class. how she lives or what she is deafblind children’s bodies. I To help Ella get a feel for all about. You don’t know knew then that I wanted to what is happening, Bente has how to go up and say hello, bring this back to Denmark.” created two ‘new’ yoga signs. but it is possible to find the Upon getting her teaching She said she created two courage. It’s important to certification, Bente put an of them so far. She draws a remember that when she, or advertisement in a deafblind smiley mouth on the back other people like Ella, are magazine offering yoga of one of Ella’s shoulders to on the yoga mat, they’re no teaching. She received one let her know she’s doing the different from you or me.” response. This one response pose perfectly. She’ll also You don’t need eyesight to came from Ella Shaeffer gently scratch on the back of see the light, and you don’t who is 69 years old. Before one of Ella’s shoulders to let need hearing to listen to its reading Bente’s article, Ella her know when the class is sweet, supreme guidance. said she knew nothing about laughing. Thank you Bente, thank you yoga, yet she wanted to It was obvious to me that so much. practice because she wanted perhaps yoga isn’t an option Tanya Lee Markul to do exercise, but didn’t available to most people who Yoga writer for the know how: are deafblind. I asked Ella Elephant Journal “I wanted to practice yoga what she thought about this: www.elephantjournal.com because my body was very “This is new for deafblind stiff. I should have started people. Many of them Bente Ramsing – Consultant, practicing long before, but I wouldn’t be open to this or The Centre for Deafblindness could not find an interpreter. they don’t know about it. A and Hearing Impairment, I started yoga because I lot of them are scared to try Aalborg, Denmark (Bente. wanted to feel my muscles new things. It’s just the way [email protected]) and my body.” it has been.” And, what about teaching Ella and Bente to deafblind? Bente said that it isn’t very common I asked Ella how her body for people to teach yoga to You don’t need eyesight to see was feeling now that she had “ people who are deafblind. the light, and you don’t need been practicing for several This is something new; as months: teacher you would have hearing to listen to its sweet, “My body has changed a to get very close to the lot. I’m not 100% without student; it can be a matter of supreme guidance problems, but my body ”

July 2012 • DbI Review • 51 SubGenerating head positive interactions

(continued from page 17) not be able to compete with the understood (Butterfield and observed in some secondary school impact of television or interactive Arthur, 1995). Communication classrooms. By way of contrast, videos, but they can ensure that therefore requires form, content, some early childhood and primary they have: a reason and a purpose. Stremel classrooms are so over-decorated l fully prepared and planned and Schutz (1995) have proposed and visually stimulating that lessons; that any definition of functional students can become preoccupied l variety and structure in their communication must consider with sensation. For some students lessons, and the bio-ecology of the individual who are deafblind or have l strategies to make the lesson and include all aspects of his or multiple disabilities, such a busy content interesting and her social system. They propose environment may exacerbate engaging. that among the numerous distractability and subsequent aspects that comprise functional inattention. In a 1991 study of State of communication, the following Room layout can also affect Victoria teachers (Lovegrove, concepts are essential: management of student behaviour. Lewis and Burman, 1991), the l that it is interactive; Where a student requires investigators studying effective l that it mediates subsequent considerable space in a room classroom discipline found that events; to manoeuvre a wheelchair, for students identified the following l that it can be used effectively in example, the individual’s needs characteristics in their preferred everyday settings with adults, might well determine room layout (best) teachers: children and peers; for all members of the class. Some twenty years ago, research l presented information in ways l that it achieves material and that could be understood by the social outcomes, and by Merrett and Wheldall (1990) indicated that rows of single student; l that it progresses to higher levels desks in a classroom may actually l had pleasant personalities; of efficiency and effectiveness. reduce behavioural disruption l treated students as individuals, and increase on-task time at and When communication is primary and secondary levels. It unconventional and/or difficult l delivered content in a format would be interesting to compare to interpret, adaptations are that was interesting to students. such findings with the present- necessary to ensure consistency of These characteristics reflect the day preference for group seating response across team members. important links between social and which is commonly seen in primary To provide greater partner academic focal areas. school classrooms and open-plan responsiveness and enhance secondary education settings. Communication positive interaction, Mirenda (1999) has advocated the Students with complex disabilities development and use of a gesture Daily schedules may not have full access to, or full dictionary, while Downing (1999) Timetabling can present difficulties control of, the multiple means by has emphasized the importance of or give support in managing which the majority of students enhancing the social environment, classroom behaviour. The in regular schools communicate; and in particular, taking streaming and grading of subject that is, through facial expression, advantage of naturally occurring timetables in secondary schools is speech, body language and opportunities within the classroom. a case in point. Some timetables print. Biklen (1993) and Crossley in regular schools generate (1992) highlight the tendency for In the classroom difficulties for students with teachers, parents and ancillary mobility restrictions that prevent The physical features of classrooms personnel to assume that when timely movement from class to exert an important influence on individuals demonstrate minimal class. In addition, students with teacher and student behaviour. communication skills, they have severe or multiple disabilities often Classrooms that are poorly little or nothing to say. become fatigued as the school maintained and present few Simply stated, communication day progresses, and can therefore stimulating features fail to create is the exchange of a message find it difficult to maintain their an environment in which students between a sender and a receiver concentration in afternoon classes. are encouraged to learn. This in a manner which enables Teachers may misinterpret this bareness and disregard can be the intended message to be inattention as a problem behaviour

52 • DbI Review • July 2012 Generating positive interactions

when, in fact, the problem is l variety of teaching approaches classrooms is to ensure that teacher inappropriate timetabling. and techniques (for example, preparation for lessons is thorough contract, project approaches; and that good management plans Effective management l addressing all learning modes are in place to cover total student (haptic, aural, visual); There are obvious benefits participation throughout the l high expectations; to the increased inclusion of duration of the lesson (Foreman, students with varied and complex l classroom atmosphere conducive 2011). disabilities in regular school to learning, active participation environments. Indeed, researchers and the building of trusting In conclusion have found that inclusion is relationships; This brief article has focussed on beneficial not only to the students l positive reinforcement; the importance of developing with disabilities, but also to regular l reward systems in place (using positive social interactions classmates who are not disabled both internal and external within regular school classrooms. (Downing and Peckham-Harding, motivators); Together with learning (academic) 2007). Among the benefits that l continuous evaluation skills, social participation is have been reported are the (traditional and authentic); imperative if the student with students’ increased opportunities l multisensory approaches to severe or multiple disabilities is to to form friendships and enhance engagement (teaching); maintain, and enjoy, regular school social relationships with their l small group and co-operative placement. Social and behavioural age peers. Kennedy and Itkonen group work; problems are likely to occur at any (1994) found that regular class time and in any class; they are not l opportunities for frequent participation by students with interaction , and the exclusive province of students severe and multiple disabilities with special needs. l connection between topic, significantly increased their social Students who are deafblind are student interests, experiences contact with typically developing often rejected by regular class and community (p.232). children. Classroom peers were teachers and students because found to account for 48% of social they do not have the interpersonal Importantly, these strategies interactions with age peers during and work-related skills expected reflect good classroom the year. More recent studies of their class peers. A variety management practice regardless have observed some of these of approaches can be used to of whether any student requires interactions to continue outside address the development of unique support and resources. the classroom, suggesting that social participation and positive The extent of teacher students act on opportunity and interaction skills. These include preparation for each class has interest in generalising social skills specific behaviour management an important effect on student beyond the initial context and programs, cognitive and behaviour during lessons. If setting (Correa-Torres, 2008). metacognitive strategies, social there are a number of hard-to- A number of strategies which skills programs, cooperative serve students in a particular relate to classroom management learning methods and friendship- class, there is need to ensure have been discussed in papers peer support programs. that adequate and appropriate reviewing best practice for Social participation depends activities are prepared for each. optimising the social participation on interaction, and as Foreman This is particularly the case if the and learning of students with (2011) has pointed out, interaction students are to perform tasks that significant special needs (Moeller is a two-way process, so the differ from those assigned to the and Ishii-Jordan, 1996; Moller and development of social skills should majority of students in the class. Danermark, 2007). Foreman (2011) not focus merely on the student The ways in which teachers notes these strategies to include: with severe or multiple disabilities, communicate with students l consistent structure, routine and but also on his non-disabled also affects, for better or worse, predictability; peers, the class teacher and aide, lesson preparation and student l explicit rules, co-constructed and ultimately on his school behaviour. One of the secrets where possible with student community. of successful teacher-student input; performance in regular school

July 2012 • DbI Review • 53 Generating positive interactions

References Crimmins, D.B. (1994). Quality of Furneaux, B. (1988). Special life for persons with challenging parents. Milton Keynes: Open Aitken, S., Buultjens, M., Clark, behaviours. In D. Goode (Ed.) University Press. C., Eyre, J., & Pease, L. (2000). Quality of life for persons Goetz, L. (1995). Inclusion of Teaching children who are with disabilities: International disabled. London: David Fulton students who are deaf-blind. In perspectives and issues. N.G. Haring & L. T. Publishers. Cambridge, MA: Brookline Books. Haring, N.G. & Romer, L. T. (Eds.). Allen, J. (1995). Working Croll, P., & Moses, D. (1995). One in with families of dual sensory Welcoming students who are five… London: Routledge & Kegan deaf-blind into typical classrooms. impaired children: A professional Paul. perspective. In D. Etheridge, Sydney: Paul H. Brookes. The education of dual sensory Crossley, R. (1992). Getting Guralnick, M.J. (2008). impaired children. London: David the words out: Case studies International perspectives on Fulton. in facilitated communication early intervention. A search for training. Topics in Language common ground. Journal of Early Biklen, D. (1993). Communication Disorders,12(4), 46-49. unbound. New York: Teachers Intervention, 30, 90-101. College Press. Devlin, B., & Devlin, N. (2004). Kennedy, C. H. & Itkonen, T. (1994). Supporting students with special Some effects of regular class Butterfield, M., & Arthur, education needs, especially those M. (1995). Shifting the participation on the social contacts with multiple disabilities (including and social networks of high school focus: Emerging priorities in deafblindness): A report from communication programming for students with severe disabilities. Australia. Paper presented at 24th JASH ,19(1), 1-10. students with severe intellectual Asia-Pacific International Seminar disabilities. Education and on Special Education (UNESCO), Koster, M., Nakken, H., Pijl, Training in Mental Retardation Yokosuka, Japan. S.J., & van Houten, E. (2009). and Developmental Disabilities, Being part of the peer group: a 30, 41-50. Downing, J.E. (1999). Teaching literature study focusing on the communication skills to students Charles, C.M. (1991). Building social dimension of inclusion in with severe disabilities. Baltimore: education. International Journal classroom discipline: From models Brookes. to practice (3rd ed.). New York: of Inclusive Education, 13(2), 117- Longman. Downing, J.E. (2001). Meeting 140. the communication needs of Chen, D. (1999). Essential Lovegrove, M.N., Lewis, R, & students with severe and multiple Burman, E. (1991). You can’t elements in early intervention: disabilities in general education Visual impairment and multiple make me: Developing effective classrooms. Exceptionality, 9(3), classroom discipline (revised edn.). disabilities. New York: American 147-156. Foundation of the Blind Press. Melbourne: La Trobe University Downing, J.E., & Peckham-Hardin, Press. Clark, S. (2000). Personal and K.D. (2007). Inclusive education: Merrett, F., & Wheldall, K. (1990). social development. In S. Aitken, What makes it a good education M. Buultjens, C. Clark. J. Eyre & L. Positive teaching in the primary for students with moderate to school. London: Paul Chapman. Pease. Teaching children who are severe disabilities? Research and disabled. London: David Fulton Practice for Persons with Severe Miles, B. (2000). Overview on deaf- Publishers. Disabilites, 32(1), 16-30. blindness. Retrieved 04.07.2002. Conway, R. (1996). Encouraging from http://www.tr.wosc.edu/ Etheridge, D. (1995). The dblink/ovrview2.htm positive interactions. In P. Foreman education of dual sensory (Ed.). Integration and inclusion in impaired children. London: David Mirenda, P. (1999). AAC: action. Sydney: Harcourt Brace. Fulton. Bonding the uncertain mosaic. Correa-Torres, S.M. (2008). The Augmentative and Alternative Foreman, P. (2000). Integration Communication, 9, 3-9. nature of the social experiences of and inclusion in action. (2nd ed.) students with deaf-blindness who Sydney: Harcourt. Moeller, A.J. & Ishii-Jordan, S. are educated in inclusive settings. (1996). Teacher efficacy: A model Journal of Visual Impairment & Foreman, P. (2011). Inclusion for teacher development and Blindness. 102(5), 272-83. in action. (3rd ed.) Melbourne: inclusion. Journal of Behavioural Cengage Learning. Education,6 (3), 293-310.

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Moller, K., & Danermark, B. (2007). instruction to maximize functional Stremel, K., & Schutz, R. (1995). Social recognition, participation, outcomes for students with Functional communication in and the dynamic between the profound multiple disabilities. inclusive settings for students who environment and personal factors Exceptionality, 9(3), 135-146. are deaf-blind. In N.G. Haring & of students with deafblindness. Smull, M., & Harrison, S.B. (1992). L. T. Romer (Eds.), Welcoming American Annals of the Deaf, Supporting people with severe students who are deaf-blind into 152(1), 42-55. reputations in the community. typical classrooms. Sydney: Paul H. Neary, T. & Halvorsen, A. (1995). Baltimore, MD: National Brookes. Inclusive education guidelines. Association of State Directors Turnbull, A., Turnbull, R., Erwin, Sacramento, CA: PEERS Project, of Developmental Disabilities E.J., Soodak, L.C., & Shogren, K.A. California State Department of Services Inc. (2011). Families, Professionals, and Education. Steer, M. (2001). Hats off to the Exceptionality. (6th ed.) Boston, Smith, P., Gast, D., Logan, K., & NSW Department of Education and MA: Pearson. Jacobs, H. (2001). Customizing Training. Beacon, 19, April, 8-10. DbI Membership eafblind International The general benefit offered to membership category may be (DbI), formerly called the all members is knowing that nominated for any of the executive DInternational Association you are part of an international offices and be nominated to sit of Educators of Deafblind Persons organisation promoting the on the Management Committee (IAEDB) was founded by educators awareness of deafblindness as a and Board. There are three tiers in the 1960’s who recognized unique disability and influencing of corporate membership (large, the value of regularly sharing services for deafblind people small and mini), depending on information and ideas about around the world. All memberships the size of the organization and deafblind education. Today, DbI give access to up to date the membership fee paid. Further brings together deafblind people, information through the website details about DbI membership, families and professionals from (www.deafblindinternational. including cost and benefits can be 37 countries around the world org), biannual editions of DbI viewed on the DbI website. to support the development of Review, participating in DbI services for deafblind people. Networks, opportunities to attend How to become a member? As deafblindness is a low and participate in world and You can join online at: http:// incidence disability, international regional conferences, connect with www.deafblindinternational. networking and the sharing of professionals in the field as well org/membership.html or contact information is essential to the as deafblind people and family the DbI Secretariat (secretariat@ development of quality services for members. deafblindinternational.org) deafblind people. A key to this is Corporate memberships provide for further information. membership. an opportunity to contribute to Check DbI out on Facebook DbI offers 3 types of memberships: the decision making process of (www.facebook.com/dbiint) or corporate, individual and library. DbI. Representatives from this Twitter: @DeafblindInt

Editorial (continued from page 3) Once again it is a treat to hear be missed by everyone through his about activities from regions not incredible humanity, intelligence, American virtual conference regularly reporting such as Hong humour, musical gifts and on Deafblindness and Multiple Kong and Greece. But there is inspirational words of wisdom.This Disabilities which allowed over much much more in this edition edition of DbI Review is dedicated 460 individuals to link online to than my brief remarks about the to the memory of Lex Grandia, participate in this event over a content. 1950-2012. period of 5 weeks. Is this type of Finally, I must reflect on the event, very successful according to recent loss of Lex Grandia, one of Respectfully, Vula and Shirley, a harbinger for the giants of the deafblind world, Stan Munroe, future conferences? who left us much too soon. Lex will Information Officer DbI, July 2012

July 2012 • DbI Review • 55 William Green

William Green, past President of DbI

Recognized for his many years of dedication to deafblindness

eafblind International is seeking the language of love in taking an opportunity in France. With his experience in Dthis edition of DbI Review deafblindness gained in Norway, to acknowledge DbI immediate he became a welcome asset to Past President William Green for the Special Educational Centre for his long standing contributions to Deafblindness in Poitiers, France the field of deafblindness and to where he was involved in staff DbI. training and adult and family William’s career in the field of services. deafblindness extends back almost By 1988, the romantic language 40 years; to the time when children of France fell victim to the lure of with rubella syndrome were the latin way of life; Italy was now entering the educational system in the next adventure in William’s the middle 1970’s. march through Europe with his His curriculum vitae indicates multi-linguistic focus. It was his that his first foray working with passion for deafblindness and sensory disabled individuals was the desire to improve the lives of Conferences, as a speaker or in Oslo Norway in 1973 when he people with this disability that member of the planning and worked as a House father in a took William this time to Osimo Scientific Committees in the last 30 Home for the Deaf. Several years Italy and the Lega del Filo D’Oro, years. William has been a member after that (1976), he headed up where he has been on staff and in of the International Executive a National Study on the needs of consulting roles to the present day. and Management Committee’s deafblind people in Norway; which Throughout William’s career, since the early 1980’s. He has led eventually to participating on he has been involved in one participated in strategic planning the State National Team dealing way or another with DbI or as and the nominating committee at with numerous awareness, training it was once named IAEDB, the various times. William was elected and program development International Association for as DbI Vice President in 1999 and activities. the Education of Persons with became President in 2003 and William, ever so wishing to Deafblindness, beginning in the served two terms until 2011. become fluent in another working early 1980’s. He’s participated in In addition to DbI activities, language, left Norway in 1981 all the International and European William has participated in numerous conferences in Europe and around the world; speaking on a wide variety of important issues related to deafblind people, including: Quality of Life, Volunteerism, Employment; Decision making; Ethics; Communication; Elderly issues, etc. These are but a representative sample of the key activities of William over these almost four decades of work dedicated to deafblind people. The following are words of tribute from three individuals who have known William through most

56 • DbI Review • July 2012 William Green

of his career: conference had been organised similar interests, and loves being Rodney Clark, former CEO down to the last detail and able to help people by putting Sense UK and Secretary DbI: William seemed to be ubiquitous, people in touch, and sharing what “William’s professional growth appearing whenever needed, he thinks they can use. Creating during this time was prodigious, and always there with the right and nurturing networks has been and the once rather laid-back word or action. And in addition a really strong feature of DbI young man turned into an to the efficiency of the event, over the past ten years, and this is effective statutory fundraiser, William also exuded warmth and largely due to William’s talent and a very effective creator of new a welcome for which we have all contribution.” projects and programmes and loved him for many years.” a singularly successful organiser Gilliam Morbey, current CEO of national and international Tony Best, former CEO Sense UK and President of seminars and conferences, too Sense UK: “So it was absolutely DbI: “I am quite sure that William many to mention. I well remember right, when DbI created ‘networks’ would say he owes a great deal the Helen Keller Conference on the in 1990s, that William was put in to the world of deafblindness. I Adriatic Coast, a difficult operation charge of them. He was exactly can’t imagine how many countries to mount at the best of times, right for that job as he was so William has been to or the number when deafblind people, their generous with all his knowledge of institutions and deafblind interpreters and guides would and contacts. He was able to people he has met. William would descend from the four corners of pass on all kinds of information, say he has been privileged but I the earth with a near inexhaustible ideas and people’s details to help think we know there has been list of needs that required meeting colleagues develop their services personal sacrifice along the way if they were to get anything from and improve their practice. He has and we are lucky to have William the event. Everything about this an instinct for creating connections as a driving force in our deafblind by noticing when people have community.”

July 2012 • DbI Review • 57 SubSecretariat head news

A busy and productive year already!

DbI Meetings (1), Denmark (2), Sweden (1), The DbI Management Committee USA (3), Guatemala (1), UK (1), was pleased to visit France, Italy (1), Spain (3), Netherlands February 10-13, earlier this year. (1), and France (1) to participate It was a wonderful opportunity in these meetings. With such a to meet with the Local Planning great number of Board members Committee and Scientific in attendance, we were able to Committee for the DbI European pool our experience and achieve a Conference, scheduled for August significant amount of work for DbI. 2013 in the wonderful town of The Strategic Plan has provided Lille. A tour of the conference the framework for the goals ahead facilities and the chance to talk and with the enthusiasm displayed Elvira and Bronte in front of Place du through the progress for the by the Board members; we look Général de Gaulle, Lille, France conference preparations instilled forward to accomplishing many of great confidence in us that this these goals in the near future. Just a few short months conference will be particularly DbI was most grateful for the following France, we had the special and a significant event hospitality offered by staff at great pleasure of meeting with for DbI. We congratulate HKNC (Nancy O’Donnell, Bernie the DbI Board and Management all the committee members Wynne and Allison Burroughs) who Committee in New York. The involved and will keep the DbI toured the participants through New York Institute for Special members informed of conference the Center where we met some of Education (NYISE - www.nyise. announcements and important the clients and staff. We were also org) in the Bronx and the Helen information as it becomes pleased to take the opportunity Keller National Centre for Deaf- available. to inform HKNC staff about the Blind Youths and Adults workings of DbI. Sr.Bernadette Wynne (HKNC) touring (HKNC - www.hknc.org) We give a huge thank you also to DbI Board members on Long Island were Vice President Bernadette Kappen kind enough to host the for her exceptional help in the lead ManCom, Board and up to our meetings and for hosting General Meetings, May the participants at NYISE. 03- 06. Twenty five Board Farewell Lex Grandia members travelled It was with great sadness and a to New York from heavy heart we learned of the Argentina (2), Australia passing of Lex Grandia. In New (3), Canada (4), York, the DbI Board commenced the Germany (1), Norway meetings with a Minute silence as

DbI Board at Helen Kellen National Center, May 2012 DbI Mancom in Lille France, February 2012

58 • DbI Review • July 2012 Secretariatsubhead news

Treasurer Ton welcome/welcome back members and President from Australia, Canada, Croatia, Gillian at Denmark, Spain, Finland, UK, DbI Annual Guatemala, The Netherlands, Gill Morbey (right) thanks HKNC tour organizer Meeting, May 5, Austria, Portugal, Japan, USA, Allison Burroughs 2012 Norway, Ireland, Spain and New a mark of our respect for Lex. The you to register for the conference Zealand. As a member of DbI, you Board signed a card on behalf of and check out the preliminary can help spread the word about DbI as a whole and this along with program online at www.skane.se/ our organization and encourage the many heartfelt messages sent to adbn2012. The DbI Management your colleagues and people who the Secretariat from members have Committee will meet to host their are interested in DbI to become been sent to his family. meetings in Lund immediately a member. All the information prior to the conference and the is available on the DbI website ADBN Conference Secretariat looks forward to www.deafblindinternational.org. Momentum is gaining as the representing DbI at the conference Alternatively you can email us at ADBN Conference in Lund, Sweden where people can join or renew secretariat@deafblindinternational. is fast approaching. We are as a member and catch up on all org and we will be happy to assist pleased to circulate conference things DbI. with any enquiries. announcements and important Membership Thank you news via the DbI website and Following the conference in Elvira Edwards and Bronte Pyett, emails to members. We encourage Sao Paulo, we were pleased to DbI Secretariat Proudly managed by Senses Foundation Inc. Joint Meeting DbI Mancom and European Conference Planning Group, Lille France, Feb 2012

July 2012 • DbI Review • 59 DbI Board membership

DbI Board Membership 2011-2015

Management Committee

The Management Committee for the 2011-2015 period includes the two elected officers (President and the two Vice Presidents), the Past President, the Information Officer and the Secretary:

Gillian Morbey Carolyn Monaco William Green President Vice-President Immediate Past President Sense UK Canadian Deafblind Association Lega del Filo d’Oro ([email protected]) CANADA ITALY ([email protected]) ([email protected])

Bernadette Kappen Ton Groot Zwaaftink Stan Munroe Vice-President Treasurer Information Officer The New York Institute for Special Group Royal Dutch Kentalis Canadian Deafblind Association Education NETHERLANDS CANADA USA (T.GrootZwaaftink ([email protected]) ([email protected]) @kentalis.nl)

Elvira Edwards Secretary Senses Foundation AUSTRALIA ([email protected])

Board Observers

DbI’s partner organizations, ICEVI and WFDB have observer status on the DbI Board:

International Council for Education of World Federation of the Deafblind People with Visual Impairment Contact: [email protected] Contact: Dr. M.N.G. Mani website: www.wfdb.org Email: [email protected] Website: www.icevi.org

60 • DbI Review • July 2012 DbI Board membership

Representing Large Corporate Members

Gillian Morbey Michael Karlsson Sian Tesni Sense UK Resurscenter Mo Christian Blind (Gillian.Morbey@ Gard Mission (Christoffel sense.org.uk) SWEDEN Blindenmission) (michael.karlsson@ UK mogard.se) (siantesni@cbmuk. org.uk)

Andy Kerr no photo Pierre J. Honore Ton Groot Sense Scotland available Interfond Zwaaftink UK DENMARK Group Royal Dutch (akerr@sense (pjh.interfond@ Kentalis scotland.org.uk) mail.dk) NETHERLANDS (T.GrootZwaaftink @kentalis.nl) Barbara Mason Pilar Gomez Jutta Wiese Perkins School for ONCE German Deafblind the Blind SPAIN Consortium USA ([email protected]) GERMANY (Barbara.Mason@ (jutta.wiese@ perkins.org) blindeninstitut.de)

Dominique Rossano Bartoli Roxanna Spriet Lega del Filo d’Oro Spruyt-Rocks French Deafblind ITALY DeafBlind Ontario Consortium (info@legadelfilo Services CANADA FRANCE doro.it ) (execdir@deafblind (sprietd@aftam. ontario.com) asso.fr)

Representing DbI Networks

Andrea Scheele Liz Duncan Sabine Kersten CHARGE Network Acquired Siblings Network University of Deafblindness BELGIUM Education Network (siblingsnetwork@ Heidelberg UK gmx.net) GERMANY (Liz.Duncan@ (andrea-wanka@ sense.org.uk) dbicharge.org)

Diana Bonilla Ricard Lopez no photo Emma Boswell Employment European available Usher Network Study Network Deafblind Network Group GUATEMALA SPAIN email contact: (comunicacion@ ([email protected]) (Emma.Boswell@ fundal.org.gt) sense.org.uk)

July 2012 • DbI Review • 61 DbI Board membership

Representing Small Corporate Members

Beatriz Zoppi Henriette Marianne Disch Cooperative Hermann Olesen The National Centre Association “Look Nordic Centre for of Knowledge on with the Heart” Welfare and Social Disability and Social (COOPA) Issues Psychiatry (ViHS) ARGENTINA DENMARK DENMARK (beatrizzoppi@ (henriette.olesen@ (mdi@service gmail.com) nordicwelfare.org) styrelsen.dk)

Cathy Proll Jackie Brennan Ricard Lopez Canadian Deafblind Overbrook School Spanish Federation Association Ontario for the Blind of Deafblindness Chapter USA (FESOCE) SPAIN CANADA ([email protected]) (rlopez@ (cproll@cdba sordoceguera.com; ontario.com) [email protected])

Celestine Hare Knut Johansen Ursula Able Australia Signo Heinemann AUSTRALIA Døvblindesenter Österreiches (Celestine.hare@ NORWAY Hilfswerk für ableaustralia.org.au) (knut.johansen@ Taubblinde signo.no) AUSTRIA (c.heinemann@ zentrale.oehtb.at)

Graciela Ferioli Koh Poh Kwang Bernadette Perkins International Lighthouse School Kappen - Latin America SINGAPORE The New York Office (kohpohkwang@ Institute for Special ARGENTINA lighthouse.edu.sg) Education USA (hperkins@ ([email protected]) fibertel.com.ar)

Elvira Edwards Senses Foundation AUSTRALIA (elvira.edwards@ senses.asn.au)

62 • DbI Review • July 2012 Membership

deaFBlind international Become a dBi memBer today!

DbI recognizes that the success it achieves worldwide greatly depends upon the support of it’s members to promote awareness and services.

MeMBersHiP OF DBi is OPen TO: Corporate Organizations Individuals Libraries and Universities

www.deafblindinternational.org

July 2012 • DbI Review • 63 The World Association Small Corporate Members

Promoting Services for ARGENTINA Rotary Cheshire Homes IRELAND Spanish Federation of Cooperative Association Jennifer Robbins The Anne Sullivan Centre Deafblindness (FESOCE) Deafblind People “Look with the Heart” Tel: +1 - 416 - 730 - 9501 Finola Loughney Ricard Lopez i Manzano (COOPA) Fax: +1 - 416 - 730 - 1350 Tel: +353 - 1 - 289 8339 Tel: +34 93 331 7366 Beatriz Angelica Zoppi Email: info@ Fax: +353 - 1 - 289 8408 Fax: +34 93 331 4220 Tel: +54 - 2302 - 430 690 rotarycheshirehomes.org Email: floughney@ Email: [email protected] Honorary Officers Fax: +54 - 2302 - 434 274 Website: www. annesullivancentre.ie Website: www.fescoe.org President Vice-President Tel: +31 73 55 88 280 Email: beatrizzoppi@ rotarycheshirehomes.org Website: www. SWEDEN Gill Morbey Carolyn Monaco Email: T.GrootZwaaftink@ gmail.com The Lions McInnes annesullivan.ie The Swedish Resource Sense Canadian Deafblind Association kentalis.nl Perkins International - House - Group Home for ISRAEL Centre for Matters 101, Pentonville Road 254 Governor’s Road Latin America Office Deafblind Persons Nalaga’at Center Regarding Deafblindness Secretary Graciela Ferioli Joan Brintnell London, N1 9LG Dundas, ON, L9H 3K3 Elvira Edwards Adina Tal Michael Karlsson UNITED KINGDOM CANADA Tel: +54 351 4234741 Tel: +1 - 519 - 752 - 6450 Tel: +972 3 633 08 08 Tel: +8 753 5940 Senses Foundation Inc. Fax: +54 351 4234741 Fax: +1 - 519 - 752 - 9049 Tel: +44 20 7520 0999 Tel: +1(905) 628-8772 PO Box 143 Fax: +972 3 682 37 15 Fax: +8 755 2368 Email: Email: Email: hperkins@fibertel. Email: LionsMcInnes Email: Email: michael.karlsson@ Burswood WA 6100 com.ar [email protected] [email protected] [email protected] AUSTRALIA [email protected] mogard.se Vice-President Immediate Past President Tel: +61- 8-9473 5422 AUSTRALIA CHINA HONG Website: Website: www.nkcdb.se Bernadette Kappen William Green Email: Elvira.Edwards@senses. Senses Foundation Inc KONG www.nalagaat.org.il SWITZERLAND The New York Institute for Special Lega del Filo D’Oro asn.au Elvira Edwards Resource Centre for the INDIA SZB Beratungsstellen für Education Via Montecerno 1, Osimo 60027 Tel: +61 - 8 - 9473 5422 Deafblind Sense International hörsehbehinderte und Information Officer Hong Kong Society for 999 Pelham Pkwy, ITALY Stan Munroe Fax: +61 - 8 - 9473 5499 (India) taubblinde Menschen Bronx, New York 10469 Tel: +39-71-72451 Email: Elvira.Edwards@ the Blind Akhil Paul Mäde Müller Canadian Deafblind Association Doreen Mui USA Email: [email protected] 2652 Morien Highway senses.asn.au Tel: +91-79-26301282 Tel: +41 (0)44 444 10 81 Tel: (718) 519-7000 Website: www.senses. Tel: (852) 2778 8332 Fax: +91-79-2630 1590 Fax: +41 (0)44 444 10 88 Treasurer Port Morien Nova Scotia B1B 1C6 Fax: (852) 2777 6559 Email: [email protected] Ton Groot Zwaaftink CANADA asn.au Email: akhil@ Email: [email protected] Able Australia Email: doreen.mui@hksb. senseintindia.org Website: www.szb.ch Royal Dutch Kentalis Tel: +1 (902) 737-1453 org.hk Theerestraat 42 Email: [email protected] Celestine Hare Website: www. Tanne, Schweizerische Sint Michielsgestel 5271 GD Tel: +61 - 3 - 9882 7055 CROATIA senseintindia.org Stiftung für Taubblinde Fax: +61 - 3 - 9882 9210 NETHERLANDS Mali dom – Zagreb NEW ZEALAND Jette Ehrlich Email: Celestine.hare@ Darija Udovicic Tel: +41 - 44 - 714 7100 ableaustralia.org.au Royal New Zealand Mahmuljin Foundation for the Blind Fax: +41 - 44 - 714 7110 Website: www. Tel: +385137746532 Email: henriette.ehrlich@ ableaustralia.org.au (RNZFB) Large Corporate Members Email: [email protected] Veta Endemann tanne.ch Australian Deafblind Website: Tel: 0064-09-3556900 Website: www.tanne.ch BELGIUM GERMANY THE NETHERLANDS Council (ADBC) www.malidom.hr Fax: 0064-09-3556880 THE NETHERLANDS CBM – Christoffel Blindenmission German Deafblind Consortium Royal Dutch Kentalis Alisa Wills CYPRUS Email: vendemann@ Bartimeus Catherine Naughton Jutta Wiese Ton Groot Zwaaftink Tel: +61 3 9882 8596 Pancyprian Organization rnzfb.org.nz Raad van Bestuur Tel: 0032 (0) 2 2569000 Tel: +49 - 511 – 5100 815 Tel: +31 73 55 88 280 Fax: +61 3 9882 9210 of the Blind Website: www.rnzfb. Tel: +31 - 343 - 526 650 Email: catherine.naughton@ Fax: +49 - 511 - 5100 857 Email: T.GrootZwaaftink@ Email: info@deafblind. Christakis Nikolaides org.nz Fax: +31 - 343 - 526 798 cbm.org Email: jutta.wiese@blindeninstitut. kentalis.nl org.au Tel: +357 99657467 Email: [email protected] Website: www.cbm.org de Website: www.kentalis.nl Website: NORWAY Fax: +357 22495395 Signo kompetansesenter Website: CANADA ITALY UNITED KINGDOM www.deafblind.org.au Email: [email protected] Anne Lise Høydahl www.bartimeus.nl DeafBlind Ontario Services Lega del Filo d’Oro Sense The Royal Institute for DENMARK Tel: +4733438600 Kalorama Roxanna Spruyt-Rocks Rosanno Bartoli Gillian Morbey Deaf and Blind Children Center for Deaf Email: anne.lise. M. Verseveldt Tel: +1 - 905 - 853 - 2862 Tel: +39 - 071 - 724 51 Tel: +44 20 7520 0999 Alan Baynham Else Marie Jensen [email protected] Tel: +31 24 684 77 77 Fax: +1 - 905 - 853 - 3407 Fax: +39 - 071 - 717 102 Fax: +44 845 127 0062 Tel: +61 - 2 - 9872 0366 Tel: +45 44 39 12 50 Fax: +31 24 684 77 88 Email: Email: [email protected] Email: Gillian.Morbey@sense. Email: alan.baynham@ Signo Døvblindesenter Fax: +45 44 39 12 63 Email: M.Verseveldt@ [email protected] Website: www.legadelfilodoro.it org.uk ridbc.org.au Knut Johansen Email: [email protected] kalorama.nl; info@ Website: Website: www.sense.org.uk Website: Tel: +47-33-438 700 SPAIN Website: www.cfd.dk Email: knut.johansen@ kalorama.nl; www.deafblindontario.com Sense Scotland www.ridbc.org.au ONCE Unidad Técnica de The National Resource signo.no Website: Andy Kerr The Forsight Foundation www.kalorama.nl DENMARK Sordoceguera for the Deaf/Blind Centre on Disability, Website: www. Tel: +44 (0)141 429 0294 Royal Visio Interfond Pilar Gomez Trish Wetton Assistive Technology & signodovblindesenter.no Fax: +44 (0)141 429 0295 Kees Kuyper Pierre J. Honore Tel: +34 - 91 - 353 5637 Tel: +612 9872 9000 Social Psychiatry Eikholt Email: [email protected] Tel: +31 - 55 - 5800 695 Tel: +4563710218 Fax: +34 - 91 - 350 7972 Fax: +612 9872 9111 Marianne Disch Roar Meland Website: Email: Email: [email protected] Email: [email protected] Email: forsight@bigpond. Tel: +45 – 41 - 93 24 65 Tel: +47 3288 9050 www.sensescotland.org.uk [email protected] FRANCE Website: www.once.es com Email: mdi@ Fax: +47 3288 9052 USA servicestyrelsen.dk Email: roar.meland@ Website: www.visio.org French Deafblind Consortium SWEDEN AUSTRIA Perkins School for the Blind Website: www. eikholt.no University of Groningen Dominique Spriet Resurscenter Mo Gard Österreiches Hilfswerk Barbara Mason dovblindfodt.dk Website: www.eikholt.no Marleen Janssen Tel: +33 - 1 - 4627 4810 Michael Karlsson für Taubblinde Tel: +1 - 617 - 972 7502 Danish Parents Tel: +3150-3636575 Fax: +33 - 1- 4627 5931 Tel: +46 8 753 59 40 Christa Heinemann Regional Resource Centre Fax: +1 - 617 - 972 7354 Association Email: h.j.m.janssen@ Email: [email protected] Fax: +46 8 755 23 68 Tel: +43 - 1 - 6020 8120 for Deafblind, Statped Email: [email protected] Vibeke Faurholt rug.nl Email: michael.karlsson@ Fax: +43 - 1 - 6020 81217 Vest Website: www.perkins.org Tel: (45)+98854332 mogard.se Email: c.heinemann@ Evabritt Andreassen UNITED KINGDOM Email: faurholt@mail. Website: www.mogard.se zentrale.oehtb.at Tel: +47-55-923 485 Sense International tele.dk Website: www.oehtb.at Fax: +47-55-923 491 James Thornberry Centre for the Deafblind Email: evabritt. Email: james.thornberry@ BRAZIL Lars Søbye [email protected] senseinternational.org.uk Networks Grupo Brasil de Apoio ao Tel: +45 99 31 87 00 Skådalen Resource Website: www. Surdocego e ao Múltiplo Acquired Deafblindness European Social-Haptic Email: [email protected] Centre senseinternational.org Deficiente Sensorial Network Deafblind Union Communication Network Website: www.dbc.rn.dk Else Marie Svingen Shirley Rodriguez Maia UNITED STATES OF Liz Duncan Ricard Lopez Manzano Dr. Riitta Lahtinen & Russ Palmer Nordic Centre for Welfare Tel: +4722703702 Tel: +55 - 11 - 5579 5438 AMERICA Email: [email protected] Tel: +34-678-712-619 Tel: + 358 40 522 4201 and Social Issues Fax: +47 - 22 703 715 Fax: +55 - 11 - 5579 0032 The New York Institute Website: www.adbn.org Fax: +34-678-782-600 Email: [email protected]; Henriette Hermann Email: Else.Marie. Email: contato@ for Special Education Email: [email protected] [email protected] Olesen [email protected] CHARGE Network grupobrasil.org.br Bernadette Kappen Website: www.edbn.org Tel: +45 - 96 - 47 16 00 Website: www.statped.no Andrea Wanka Tactile Communication Website: www. Tel: (718) 519 – 7000 Fax: +45 - 96 47 16 16 RUSSIA Fax: 11+718-881-4219 Tel: ++496251939797 Latin America Network Working Group grupobrasil.org.br Email: henriette.olesen@ Fax: +4916090309876 Sandra Polti Bernadette Van den Tillaart Rehabilit Centre for Deaf Email: CANADA nordicwelfare.org Email: ARGENTINA Tel: +1-740-426-6728 “Otofon” [email protected] CDBA National Website: www. Olga Smirnova Website: www.nyise.org [email protected] Email: [email protected] Fax: +1-740-426-6728 nordicwelfare.org Tom McFadden Tel: + 7495 4651 740 Overbrook School for Communication Network Outdoor Network Email: bernadettevan Tel: +1-866-229-5832 FINLAND Fax: + 7495 456 0619 the Blind Ton Visser Joe Gibson [email protected] Fax: +1(905) 319-2027 The Finnish Deafblind Email: [email protected] Jackie Brennan Email: [email protected] Tel: 4+4 (141) 429-0294 Usher Study Group Email: tmcfadden@ Association Website: www.otofon.ru Tel: +1 - 215 - 877 0313 Employment Network Email: [email protected] Emma Boswell sympatico.ca Heikki Majava SINGAPORE Fax: +1 - 215 - 877 2466 Diana Bonilla Sinibaldi Email: Website: www. Rubella Network Tel: +358 40 529 3439 Lighthouse School Email: [email protected] Tel: +(502) 52089291 [email protected] cdbanational.com Nancy O’Donnell Fax: +358 - 9 - 54 95 3517 Koh Poh Kwang Website: www.obs.org Fax: (502) 24347934 bernadettevandentillaart@ Canadian Deafblind Tel: + 516-944-8900 x326 Email: heikki.majava@ Tel: +65-2503 755 VENEZUELA Email: tiscalimail.nl Association-Ontario Fax: +516-944-7302 kuurosokeat.fi Fax: +65-2505 348 SOCIEVEN, Sordociegos [email protected] Chapter Email: [email protected] Website: Email: kohpohkwang@ de Venezuela, A.C. Cathy Proll www.kuurosokeat.fi Siblings Network Tel: + 1-519-759-0520 lighthouse.edu.sg Maria Luz Neri de Sabine Kersten Fax: + 1-519-759-1425 GREECE Website: www. Troconis Tel: +32 476 612 879 Email: cproll@ Hellenic Association lighthouse.edu.sg Tel: + 58 - (212) - 952.94 Email: [email protected] of Deafblind “The Fax: + 58 - (212) - 952.63 cdbaontario.com SPAIN Heliotrope” Email: maluzneri@ Website: www. APASCIDE Diamanto-Toula Matsa socieven.org cdbraontario.ca Dolores Romero Mini corporate members Tel: 30-210-6440689 Website: Resource Centre for Tel: +34-91-733 5208 Fax: 30-210-6440689 www.socieven.org Manitobans who are Fax: +34-91-733 4017 NEPAL MALAWI Email: Deaf-Blind (RCMDB) Email: apascide@ Society of Deafblind Parents, African Federation of the [email protected] SDBP DeafBlind Jane Sayer apascide.org Renu Lohani Ezekiel Kumwenda Tel: 1-800-855-0511 Website: Tel: 977-1 4600450 Tel: 00 (265) 999 952 391/888 TTY: 1 204 284 2531 www.apascide.org Fax: 977 1 4600450 852 391 Fax: +204 477-1390 Email: [email protected] E-mail: kumwendaezekiel@ Email: [email protected] yahoo.com Website: www.rcmdb.mb.ca

64 • DbI Review • July 2012