Number 54 • January 2015

This edition is sponsored by Sense

Rubella immunization time in Tanzania A message from the President eafblind International was formerly known Das the International Association for the Dear Friends and colleagues, Education of Deafblind People. ur last Management DbI Review is published twice yearly, the two editions Committee (Man Com) are dated January and July. O and Board meeting were held The editor will be pleased to receive articles, news in Belfast during the ADBN items, letters, notices of books and information on forthcoming events, such as conferences and courses, conference in November. Some concerning deafblind children, young adults and of us also attended the Usher older people. Photographs are welcome. Syndrome pre-conference. All written material should be in the English language As usual ADBN’s conference and may be edited before publication. It should be was packed with interesting sent for publication to arrive by the date below. presentations and workshops. Opinions expressed in articles are those of the author A great week all round. There and should not be understood as representing the is more on the conference in coming through. Those of view of DbI. this edition so I will leave you you who have organised DbI DbI Review is also available on disk. If you are to read for yourself. conferences will remember interested in receiving your copy in this format, DbI was delighted to only too well how important please contact: welcome Lord Low, President it is to get this right. Matthew Wittorff, of ICEVI to our meeting. We Congratulations to Denmark DbI Secretariat were grateful for Lord Low’s PO Box 143, Burswood for organising the next DbI WA 6100, Australia contribution to our Board European conference in 2017. Email: [email protected] and his presentation at the They have already started Telephone (08) 9473 5422 AGM. The World Federation of their work which is fantastic. Facsimile (08) 9473 5499 Deafblind invited us to their The Man Com is equally TTY (08) 9473 5488 meeting but unfortunately our interested in the progress of dates clashed. Nevertheless nominations for 2015. Huge it’s great to be ever developing thanks must go to Cathy Proll links with our partners. and her team for guiding DbI We are currently looking at through the process. We are Editor our budgets for next year and really keen that our members Stan Munroe in particular sponsorships. take an active interest and Design We have a very small budget vote for their officers and Geoff Dunn but are all too aware that Board membership. I offer Distribution and DbI Membership the demands for people to DbI Secretariat many thanks to the Board Email: [email protected] attend events and conferences members who contributed to DbI Website are increasing. Fundraising a review of the strategic plan. Stan Munroe and Secretariat remains a struggle and there Carolyn Monaco and Matthew Editorial Office are no easy answers here I’m led this session. It will be the CDBA Office, 2652 Morien Hwy, afraid. job of the new/refreshed Board Port Morien, NS, Canada B1B 1C6 It was also good to in 2015 to check they are Tel: +1 902-737-1453 welcome James Thornberry Fax: +1 902-737-1114 happy with the draft strategy from Sense International Email: [email protected] or make their changes. and Tony Best, chair of the Website: www.deafblindinternational.org We take our responsibilities scientific committee for the for Networks very seriously and DbI world conference in Lucy Drescher gave an interim Romania in May 2015. The report. The annual reports will Cover: Rubella immunization time in Tanzania abstracts are coming in and be available in January 2015 Tony is delighted with how and we look forward to hearing the programme is shaping from all our colleagues and up. The registrations are also getting the up to date news.

LAST COPY DATE FOR THE NEXT EDITION: 15 MAY 2015 2 • DbI Review • January 2015 January 2015 • DbI Review • 2 Contents A message from the President Page 2 It’s important that DbI our Review will bring you Editorial and Contents Page 3 recognise the contributions up to date with all the that so many of you make. activities. Finally Sense is Vice President’s messages Page 4 Without your commitment delighted to be following Articles we wouldn’t be able to in the footsteps of Royal DbI World Conference have such an energetic and Dutch Kentalis and Conference Advertisement Page 5 inspirational organisation. sponsoring this edition. DbI Conference Itinerary Page 6 So if you haven’t sent your Happy reading and all the ADBN Conference/Usher Syndrome nominations for awards to best from everyone at DbI. Pre-Conference Bernadette and her team, Welcoming Speech by Gill Morbey Page 7 please do so now. Kind Regards ADBN Conference overview Page 9 So indeed it’s a busy time Gill Morbey To Work in a Professional Way Page 10 with lots going on and as ever President Deafblind Bushwalkers in Western Australia Page 13 ADBN Conference photos Page 18 Editorial Usher Syndrome PreConference overview Page 20 Usher Syndrome PreConference photos Page 21 elcome to the 54th An emotional journey Page 22 Wedition of DbI review. The importance of an Usher This edition begins with the Syndrome community Page 24 theme of conferences. Just Self-regulation of emotion in around the corner is the 16th CHARGE Syndrome Page 26 DbI World Conference, hosted International Congress Page 31 by Sense International and Conclusion of the first European Union Sense International Romania project on deafblindness Page 33 during the last week of May Perkins School for the Blind 2015. Conference Chair Touch, explore create Page 34 Tony Best has an interesting from Mark Dunning, parent update that should entice of Bella with Usher Syndrome News from Perkins Latin America Page 36 potential participants to (who was in attendance with Michael Collins named to Hall of Fame Page 37 register soon to attend this – her Dad) and Chair of the Dr. Aubrey Webson named as the first world conference held USA based Usher Coalition, Ambassador to United Nations Page 38 in Eastern Europe! an emphatic declaration Sense International In early November, of how important family India to rollout vaccine against rubella Page 39 members are in fostering key Sense Northern Ireland Rubella vaccination spreads Page 40 genetic research into Usher hosted the Usher Syndrome Educating children within their Syndrome. Conference (the first since communities in East Africa Page 41 This edition also presents 2010) followed by the 10th Everyone is in the sphere of power (Peru) Page 43 ADBN Conference. Both were just a few of the ADBN Conference presentations, Grundtvig Project – Mapping opportunities smashing successes. This for deafblind people in Europe Page 72 edition features a sampling including: a brief overview from the editor; DbI President Frambu Resource Centre for rare disorders Page 74 of the many practical and Marie’s story – a new film about provocative plenary and Gill Morbey’s welcoming address; a philosophical a congenitally deafblind girl Page 76 workshop presentations Tactile street name signs Page 77 featured during the full five plenary from Henrik days of these events. Brink about ‘working as Country News Pages 46-65 Several articles featured professionals’ in the field of Brazil, Canada, Germany, Hungary, Ireland, Italy, Jordan, Romania, UK from the Usher preconference deafblindness; and a detailed included: Emma Boswell’s description by Angela Wills Network News Pages 66-71 overview, a shortened version of a trekking adventure in CHARGE, Communications, Social Haptic of Megan Mann’s brilliant Western Australia undertaken Communication, Youth, Outdoor, Siblings by a group of adventuresome presentation about the DbI News and Membership individuals with Usher personal Emotional Journeys Secretariat News Page 78 Syndrome. experienced by several Board Membership 2011-2015 Pages 80-82 individuals from the UK; and (continued on page 42) Sense advertisement Page 83 Corporate Membership Listings Page 84 January 2015 • DbI Review • 3 Vice Presidents’ Messages

Vice Presidents’ Messages Bernadette M. Kappen reports: provide a limited number Service Award and the of sponsorships. If you are Lifetime Achievement Award. interested in sponsorship, you At the Board meeting can find the application form in Belfast, the strategic on the DbI website (http:// plan for the past four www.deafblindinternational. years was reviewed. It org/sponsorship.html). was so encouraging and I want to remind you motivating to see how to consider nominating a many of the activities have e are in the process of colleague for one of the been completed. As with Wpreparing for the World DbI Awards. People working any strategic plan – we are Conference in Romania in with individuals who are never finished. When we 2015. This will be an exciting deafblind are outstanding. meet again in Romania it time to renew friendships, They go about their work and will be a time to celebrate make new friends and never ask for praise but this the accomplishments of gather new ideas to make is the time we should honor DbI and to wish the new our programs better. The individuals and share their Board and ManCom the best program and venue for the achievements with others. in continuing the work of Conference is outstanding The nomination form is on making the world a better and I encourage you to try the website (http://www. place for individuals who are to be there. In an effort to deafblindinternational.org/ deafblind. support individuals to attend awards.html) for the Young the Conference, DbI will Professional Leadership Bernadette M. Kappen Award, the Distinguished

Carolyn Monaco reports: evaluation and engaged in of the scientific programs further discussions on this of events like this available topic at our meeting in the to persons around the world fall. Preliminary ideas were who are unable to attend in discussed and documented person. so that the 2015-2019 Board I am especially looking will have an initial frame of forward to the conference in reference upon which they can Bucharest in May where I will build their new strategic plan. be joined by at least a few ith the four-year term of I had the pleasure of of my students graduating Wthe present Man Com attending the ADBN in April from the Intervenor and Board ending at the DbI conference in Belfast in Program here in Toronto. The International conference in November and it was not only enthusiasm with which they Bucharest, Romania in only informative but inspirational. anticipate their attendance four months our more recent The opportunity to network reminds me of my first efforts have evolved around with so many people working international conference in assessment and review of within an area of our field the early 80’s and of which I our accomplishments to date that I am a little less familiar wrote in my first message on and those tasks still to be with was wonderful. I hope this page four short years ago. completed. Board members that in the future DbI through Sometimes life is just ironic! responded to a survey as the use of technology will be part of our strategic plan able to make at least portions Carolyn

4 • DbI Review • January 2015 DbI World Conference

Deafblind International (DbI) 16 th World Conference

25 - 30 May 2015 Bucharest, Romania

What is our future? Local solutions to common needs

www.dbi2015romania.com

Dates to remember: Abstract Submission & Low Registration deadline: January 30, 2015

January 2015 • DbI Review • 5 DbI World Conference

Conference Itinerary Update

16th DbI World Conference Programme update

he Scientific committee gives him invaluable programme times. These Thas recently held its 2nd experience which will be groups can create their own meeting and finalised all the relevant to national and local agenda, for example, they planning for the conference campaigning. may explore one problem, or programme1. We are now All the plenary sessions will plan future projects or simply busy putting the plan into included presentations and exchange information to help action, contacting speakers, discussion by respondents with future contacts. inviting participants to chair who will describe how they In addition there will be sessions and will soon be have found local solutions, the ever popular DbI Network arranging the presentations appropriate to their region afternoon. Each network into the daily sessions. and culture, to meet the focusses on a specific topic, needs described. and has its own priorities. The Keynote speakers have World Conference is a unique just been announced and Workshops and posters opportunity to meet people information about them – the heart of the from throughout the world is now on the conference conference who share a specific interest, website. As previously and these sessions can be advertised, the conference The Scientific Committee has used to plan, create, develop will include plenary sessions developed a programme that and enjoy. This should be a on Education & Learning, emphasises interactivity, and truly personal and interactive Identity & Belonging, and the workshops and poster experience. Advocacy & Campaigning. sessions will be a central part of the programme. Final deadlines are NOW! Plenary discussions Both of these will include the opportunity to discuss Please note the final deadline 2 Suzanne Zeedyk (Dundee presenter’s ideas, to ask for submitting an application University) will introduce the questions and to share for a workshop or poster topic of Identity & Belonging, experiences. We anticipate session is 30 January 2015, focussing on the vital role this being a highly valued and it is vital to register before emotional connection plays element in this conference the end of January 2015, to in all human functioning. Her with over 100 presentations secure the low registration fee. new book on the topic will be to choose from. published in May, 2015. Further details of the For the latest information Lars Bosselmann, Director programme will be available about the conference visit the of Christian Blind Mission’s on the conference website, DbI conference website: www. 3 (CBM) Department for when it is finalised in March. dbi2015romania.com International Alliances and Advocacy, will talk about Opportunity for all Tony Best the principles of Advocacy.4 Chair Scientific committee His work on the Millennium The conference will give an Email: Development goals and the opportunity for small groups [email protected] UN Convention on the Rights with a special interest to of Persons with Disabilities5, meet outside of the main

1 A draft of the conference program was published in Edition 53, DbI Review, July 2014. 2 http://www.educationscotland.gov.uk/ 3 www.cbm.org 4 www.un.org/millenniumgoals 5 www.un.org/disabilities/convention/conventionfull.shtml

6 • DbI Review • January 2015 ADBN Conference

Welcoming speech by Gill Morbey, CEO Sense and President DbI

’m delighted to be part of presentations. At the Ithe opening of the tenth preconference we also had Acquired Deafblind Network a clown. Those of you who Conference here in Belfast, weren’t there might not know Northern Ireland, entitled what I’m talking about. But Life, Love and Laughter. DbI is if you don’t know, could you grateful to the ADBN Network ask Megan Mann! And last for putting the spotlight on night wasn’t it special to be Acquired Deafblindness. entertained by this wonderful I attended the last ADBN group of young people conference in Lund Sweden in from the Youth Network, 2012 and was impressed with spearheaded by Simon the quality of the program Allison? and the new thinking that was As I welcome you today, I coming out of that conference take the opportunity for some and I know from the program reflections. First, I feel that here that this one won’t be the future of DbI and our any different. Your plenary organizations and deafblind speakers on this opening day, services is safe as I look Professor Richard Schoch and around at the more youthful I want now to speak from Henrik Brink, will bring to you faces that are in the audience. the point of view of CEO thoughtful presentations. Secondly, these periodic Sense to say “it’s tough Yesterday I was able to conferences and meetings are out there”. I’ve been in this attend several excellent further justification for why field for over 35 years and presentations of the Usher we need to get together! It I’ve never seen so many Syndrome preconference. is important to get together; challenges facing us. Funding While sitting there I was to renew and refresh our for services in the UK is being reminded of the late friendships and share cut from all sides despite Mary Guest and her huge knowledge. Ours is a large the fact that the need for commitment to Usher and dispersed community not services is not diminishing. Syndrome. I felt Mary on my able to come together often Organisations outside the shoulder a couple of times. enough. When we do meet, UK are experiencing similar I went with Mary in the mid we pick up where we ended difficulties. So, it is important 1980’s to Louisiana (USA), the last time; a sure sign to get together and gather an area with a high incident of a tight community. It’s strength from each other. of Usher Syndrome, and important to renew our faith The population of was reflecting on that as I and remind ourselves why we individuals that we’re working was listening to yesterday’s are here. with is not diminishing. Many of us are working with children and observing the growing When we do meet, we pick up where population of children with “ CHARGE and other rare we ended the last time; a sure sign of syndromes. Furthermore, there is an ever growing elder a tight community. It’s important to population with which we are working. Like those with renew our faith and remind ourselves Usher Syndrome, this growing population of the elderly why we are here”

January 2015 • DbI Review • 7 ADBN Conference

“Life is a song-sing it; Life is a game-play it; Life is a challenge-meet it; Life is a dream- realise it; Life is a sacrifice-offer it; Life is love; enjoy it”

facing isolation caused by needlessly by rubella. We looking at disability. So we sensory impairments is an still have massive work to have a real chance to get the issue that we need to become do on prevention of sensory word ‘disability’ in the post— more focussed on. disabilities. millennium goals and that is An issue that I am proud to Further to the subject of the really critical for us, because have with our ‘community’ international perspective, I in a year’s time, we will see is our worldwide perspective. want to mention that earlier whether this eases our flow of At this conference we are in the week the DbI Board policy and funding. We don’t pleased to welcome over was privileged to have in expect to get deafblindness or 150 delegates, from over 14 attendance, Lord Colin Low, hearing impairment included countries. Despite this, in DbI President of the International in the goals. Since individuals we still have huge gaps in Council for Education of with visual impairment terms of representation from Visually Impaired (ICEVI). I represent a huge population many parts of Asia, Africa and mention this since Lord Low is in the developing world, we Russia. It’s a huge task to get influential in the development might see vision included. representation from those of the United Nations Post- What we are hoping for at a populations. I’m delighted Millennium goals. It may be minimum is the recognition that we have a delegate surprising to know that when of disability. Even with this from Ethiopia with us. Take the initial Millennium goals recognition we could observe a moment to talk to him or were set , there were goals some positive improvements. see his workshop to see his stated for gender equality, I know that I stand between fantastic work. poverty and education, etc you and Professor Richard I was in India recently, and I but not a single mention of Schoch so I’m not going to was interested in the debates disability. Can you imagine? speak for much longer. I’m that they were having. More I know this might seem a not surprised by the ADBN’s and more they are talking long way from your day jobs. title: Life, Love and Laughter about inclusive education The reason this matters is and I fully agree with it. which is interesting for such that inevitably when the UN I turn to India the Indian a huge country where half looks at new goals for post guru and spiritual leader Sai of the children are not going 2015, funding is expected Babba for a quote which aptly to school at all. There are to follow. So we need to pay reflects the theme of this absolutely massive challenges attention to this issue as conference: “Life is a song- there. For example, I went to funding is also necessary for sing it; Life is a game-play it; see a school where there were the important research that is Life is a challenge-meet it; still many children who were required for Usher Syndrome, Life is a dream- realise it; Life deafblind through rubella. as an example. is a sacrifice-offer it; Life is Indian children and those Beginning next week I love; enjoy it”. Have a great from the African countries as will be in London because conference folks! well, are still being damaged I’m going to be part of the ‘Bond for International Development Conference’ which for the first time will be

8 • DbI Review • January 2015 ADBN Conference

ADBN Belfast, 2014 was full of ‘Life, Love and Laughter’

ongratulations to the throughout the three days CADBN Coordinating on topics that varied from: Committee and the Local Stress in People with Usher Sense Northern Ireland Syndrome, Creating Social Planning Committee for the Networks, Motivating Others, successful 10th DbI Acquired Bushwalking in Australia, Deafblindness Network Orientation and Mobility, Conference held in Belfast, Living and Working With a November 4-7, 2014. This Rare Condition, Facing Death marked the first time since – Choosing Life, From Life the 5th ADBN Conference Support to Supporting Others, was held in Harrogate, North to name a few. Yorkshire in 2004 that this And who can forget the event has occurred in the UK. climax evening event at the 1 The conference got off to Trust and Communication’. Belfast Castle , including a special start with a very This thoughtful presentation the double decker bus touching performance of the was followed by two young trip, the excellent meal Helen Keller story performed ladies from the Netherlands, and the traditional Irish by some of the members of Afroditi Manolaki and Hedda entertainment? DbI Youth Network under the de Roo who ‘put themselves The conference was direction of Simon Allison. out there’ explaining their well attended, with over The committee worked their personal life experiences with 170 persons registering magic with their six plenary Usher Syndrome. from: Australia, Brazil, sessions together satisfying Day Three started out Canada, Denmark, Ethiopia, the conference theme: ‘Life, with a plenary from Canada, France, Germany, Ireland, Love and Laughter’. The presented by Jane Sayer and Netherlands, Norway, Russia, Day One Opening Plenary Bonnie Heath. They traced Sweden, Switzerland and kicked off with Professor how a group of individuals the UK (Northern Ireland, Richard Schoch, from Belfast, who are deafblind formed England, Scotland and Wales). suggesting “What the Art of their own organization in The conference venue, the Happiness and Well-being the Province of Manitoba Holiday Inn Belfast, was an means for all of us”. Later in and successfully obtaining excellent location. The food, the day, Henrik Brink from government funding for including the breakfast and Sweden provided some insight services. The conference lunch buffets and coffee into self-examining oneself ended with a plenary from breaks ensured that many as a professional and helping Collette Gray and Martin returned home suffering from built a toolkit for new ways of Quinn (Sense Northern excess calories. working. Ireland) describing the Congratulations again Paul Hart from Scotland prevalence, profile and needs ADBN Network organizing primed everyone on Day Two of people who are deafblind committee for another with an inspirational plenary in Northern Ireland. excellent event. ‘Exploring the meaning of To complement the Happiness developed through plenaries, a complex array Stan Munroe building Relationships through of 30 workshops were held DbI Information Officer

1 www.belfastcastle.co.uk/

January 2015 • DbI Review • 9 ADBN Conference

To work in a professional way1

Henrik Brink

This Plenary is designed to be a practical session mixed with some of my ideas and theories that I will hope will provide some useful tools. I open my presentation with a series of paragraphs2 taken from the writings of Danish philosopher Sören Kierkegaard’s which illustrate his thoughts on the art of helping. “If one is truly to succeed in leading a person to a specific place, one must first and foremost take care to find him where he is and begin there. This is the secret in the entire art of helping. Anyone who cannot do this is himself under a delusion if he thinks he is able to help someone else. In order truly to help someone else, I must understand more than he – but certainly first and foremost understand what he understands. If I do not do that, then my greater understanding does not help him at all. If I nevertheless want to assert my greater understanding, then it is because I am vain or proud, then basically instead of benefiting him I really want to be admired by him. But all true helping begins with a humbling. The helper must first humble himself under the person he wants to help and thereby understand that to help is not to dominate but to serve, that to help is a not to be the most dominating but the most patient, that to help is a willingness for the time being to put up with being in the wrong and not understanding what the other understands.”

am often reminded of They want to evoke some have something to contribute. Ithese words when I am sort of sentiment. The soul working and things not shudders before oblivion What makes you skilled working according to the plan. and seeks connection at any in your profession? What is wrong? Could it be price.” Think for a moment, what what is mentioned above? Hjalmar Söderberg, Doctor quality or character you Basically, you and I have Glas3 possess that makes you a need for confirmation and especially good in what you we get confirmation through Why did you choose your are doing? Has it always been others. I have a need to feel profession? there or has it developed needed and useful. Am I good Perhaps through different throughout time? enough? Do I have what it circumstances, you just ended Knowledge is something takes? Do I find meaning in up where you are. What is that grows through time. my work? Can I be there for the drive behind your work? Learning about another person? What is your engine, what are deafblindness takes time. “People want to be loved; you fueled by? Many would There are many different failing that admired; failing answer: I’d like to help. I’d like kinds of knowledge, both that feared; failing that hated to help people and I think I theoretical and practical, and despised.

1 Plenary Presentation, 10th ADBN Conference, Belfast Northern Ireland, November 04-07, 2014 2 The Essential Kierkegaard by Søren Kierkegaard (Author), from Chapter A2, Volume 22 translated by Howard V. Hong and Edna H. Hong 3 en.wikipedia.org/wiki/Doctor_Glas

10 • DbI Review • January 2015 ADBN Conference that we need to learn. We all friend. It is a way of listening acquire the knowledge in our and being empathetic while own different ways. Some of keeping a distance to enable us are visual learners; others the client to find his or her may be auditory, kinesthetic own solutions. or tactile learners. Despite our different learning modes, Let´s get the tools out! the categories of learning The basis of this Plenary are the same: unaware is boiled down into one ignorance – aware ignorance; question: How can I become aware knowledge – unaware better equipped in to do knowledge. good professional work? I I relate this to my personal will present a few essential journey of learning about tools that should help in Deafblindness: 1) First, I don’t our daily work. For some of know that I don’t know much you, this may be well known about Deafblindness; 2) As information; for others it I started working I became might be new. Personally, the very aware of my ignorance; day I say that I know it all is 3) As time went on I realized the time for me to move on. him/her? I understood about viruses and audiograms and different Empathy Timing types of Usher Syndrome; While timing is important, then, 4) I became no longer Many clients coming to us are usually dependent there are questions to aware of my knowledge. consider. If I start a process What makes a person with a upon others. First, how can we perceive a dependent with an individual, will I be profession, professional? able to finish a session with an I believe that most of us 18-year old in various situations where normally agreement with the person? think of professionals as What if I leave the session people having a profession. we wouldn’t be? Have we ever tried being deafblind? when the person needs But why are these two words more time together? Session the same? I believe this is How hard was that? For a better way understanding times need not be fixed but because we are meant to do experience suggests that one work in professional way. The of that person we should go back to the Kierkegaard hour is sufficient. At the same question is what makes our time we need not to make way of working professional? quotes mentioned earlier. We need to be empathetic as a ourselves indispensable. As Looking the other way professionals we must strive to around, people in our work professional. When one thinks about be respectful of our time, the who don’t do good work time spent with our client and are considered as not being the deafblind person’s dependency, we should our time schedule with other professional. The meaning of clients. the word professional is: to look at this from personal perspectives. Am I an Awareness of the personal work professionally in contrast needs of each individual to those who are laymen/ independent person? How often do I ask for help? If I deafblind person is important. amateurs or doing something Recognizing when to act as a hobby. It is also defined receive support from another, how does that feel? Or do I is just as important. In our as a way of working that business we are committed can be described as conduct avoid asking because of my pride? What would happen to helping when we observe between a client and a individual’s immediate needs. professional and not as a if we would allow a client to teach us, to feel dependent on My advice is not to rush the

January 2015 • DbI Review • 11 ADBN Conference

process as their needs will not had a mother recently who There is ‘you’ and ‘I’. Using go away. As professionals we indicated she wanted to the word ‘we’ is confusing for should give ourselves time to exchange me for one of my anyone. Honestly, who else think about our best practises; colleagues as she didn’t trust is included? ‘We’ suggests then make an individual me anymore. While I didn’t that ‘you’ and ‘I’ are in plan for the deafblind person like this I consider it a part of agreement on the same level. through a collegial team the work. Actually, using ‘I’ make ‘us’, effort. This will ensure that Recently a colleague told as professionals more distinct their need will be met in good me he had a two hour session and is more respectful to our time. with a couple. The session clients as well as they become was initially planned for one an individual on their own. Dare to be silent hour; but because they were Using the proper word in One of the hardest things I on the verge of separation, the correct context mentioned find during a session with an the colleague felt he could above is the same as in any individual is to be quiet or not leave them. I questioned organization. It is not correct silent. We should let silence why he participated alone for a supervisor to say that: work for us; wait for things and his answer was that the “‘we’ decided in our last to sink in for the person. In wife wanted the meeting meeting…” We don’t ever my opinion it is an awkward but the husband refused to decide here, but ‘we’ can situation when guiding meet if someone else was have a discussion; it’s the someone; we want to chat joining. This type of session supervisor (you) who makes and be social since this is should not have been held the decisions. what we are used to. I need with one colleague; especially More could be said to allow myself to be quiet when in fact the couple about this topic of being while guiding/walking with needed marriage counselling professional. My aim with this the client; letting him/her instead. While my colleague Plenary is to start a process of focus on their walking which is was motivated to help the talking about Professionalism. comforting for the individual. couple, he was affected by I am sure you have different the potential lack of approval perspectives and that is good. from the couple had he said Acknowledging that I don’t Seeking approval no. In my opinion this was a know everything and that I Approval from our clients mistake by my colleague. am keen on learning more is for our work is important; elementary. What do I have we all need confirmation. Using the right words! in my toolbox and what is still It’s a good feeling knowing missing? one has done a good job. This is professionalism for me. But, personally, this does not For example, how often do you use the word ‘we’? ”We Henrik Brink motivate my work; nor should Social Worker/Counsellor it be the driving factor for have decided …”; “When we last met …”; ”Right, so we’re Deafblind Unit, Region any professional in the field. of Skania, Sweden People who are deafblind or finished...” ‘We’ is a very complicated (email: Henrik.Brink@ their family members might skane.se) dislike me as they will other word. For me, I rarely use the colleagues. For example, I word ‘we’ with my clients.

12 • DbI Review • January 2015 ADBN Conference

Deafblind bushwalkers in Western Australia1

esearch has suggested that a would take between 7 and 8 weeks Rperson who is deafblind is at to complete. greater risk of developing conditions The Bibbulmun Track2 is listed in affecting their physical and mental the top 20 World Best Hikes: Epic health. Studies have identified a Trails in the National Geographic. greater mortality risk to people who “South Western Australia’s answer are deafblind compared with the to the Appalachian Trail...” general population. Officially opened in 1998 For a person who is deafblind following an extension and there is often limited opportunity upgrade, the Bibbulmun Track was for physical activity impacting named after an Aboriginal sub- on their overall health with the group of the Noongar people in the potential over time of developing South West of Australia. Winding health conditions such as diabetes, through State Forrest the Track The Waugal symbol (the Aboriginal hypertension and heart disease. covers almost 1000 km (over 600 name for the mythical Rainbow Likewise depression, anxiety and miles) of isolated, rugged bushland, Serpent) was adopted to mark the trail other mental health conditions in the largest state of Australia, in recognition of the Indigenous people of the region. can be attributed to the social starting in Kalamunda (near Perth) isolation that many people with and finishing in Albany on the deafblindness experience. Southern Ocean. calling themselves the Usher Army! Sharyn Mitchell (age 50) has Other members of the USSGWA Their goal: Usher Type II and is an active expressed an interest in joining l To walk the Bibbulmun Track member of the Usher Syndrome Sharyn. This was not a Senses l To raise awareness of Usher Support Group in Western Australia Australia initiative and the Syndrome (USSGWA). Early in 2013 Sharyn deafblind walkers took the lead l To raise funds to support the set herself a challenge to walk the in planning and organising the USSGWA Bibbulmun Track end-to-end that challenge under Sharyn’s leadership … and to Defy Adversity!

George (age 53 – Usher I) Sharyn (age 50 – Usher II) Eddie (age 49 – Usher I) Sharyn with her guide dog Versace David (age 38 – Usher II) made up the original group of walkers

1 Paper was presented as a workshop at the 10th ADBN Conference in Belfast, Northern Ireland 2 www.adventure.nationalgeographic.com; www.bibbulmuntrack.org.au

January 2015 • DbI Review • 13 ADBN Conference

The group were soon to be joined by two other deafblind walkers.

Greg (age 36, previously from Western Australia, now living in New South Wales).

…and Rita (age 53 – Usher II) who joined July 2013 having emigrated from the UK to Perth

What preparation was required to make this dream a reality?

Some difficult decisions were commitments was to walk the track Guidance was sought from made along the way. Due to in sections (there are 9 sections in local “experts” who provided personal circumstances Sharyn total) rather than walking end-to- their knowledge of practical skills decided that she would not end in one go. One section has now needed and advising of numerous continue with the walking, however, been completed. The next trek is risks associated with the bush she and her partner would remain planned for April 2015. walking, some seasonal such as involved in the planning and Fund raising was a must. Sharyn snakes, spiders and ticks. Other practical support needed on the and her partner were involved risks included potential falls and walks. in fund raising, securing small rough terrain, dehydration and grants and sponsorship and Senses availability of water. Walking during The other decision made due Australia also supported in applying summer months was avoided due to the logistics of coordinating for grants. to extreme weather conditions and walkers and volunteers around work potential of bush fires.

Sighted guide volunteers were recruited including a number of staff from Senses Australia. Training started in May 2013 with practice walks initially every 2 to 3 weeks eventually becoming weekly training walks averaging around 8 km gradually increasing in length up to 25 km to build up fitness levels.

14 • DbI Review • January 2015 ADBN Conference

Sighted guide volunteers were Health benefits of recruited including a number Bushwalking of staff from Senses Australia. As time went on some Training started in May 2013 with positive changes in the practice walks initially every 2 to 3 Usher walkers were weeks eventually becoming weekly observed including training walks averaging around 8 increased confidence, km gradually increasing in length up and evidence of health to 25 km to build up fitness levels… benefits. There was also …and stepping it up to the bush a social aspect to the walks practising the real thing with walking, meeting at the back packs weighted as this would pub afterwards! be a requirement when camping. Beyond Blue, a national Sighted guiding required lots of depression initiative in Australia physical and psychological well- concentration, as seen with Don promotes the benefits of bush being (Beyond Blue to Green: The and Kirsten-Lee supporting George walking to improve mental health, benefits of contact with nature for to negotiate a deep drop using stating that contact with nature mental health and well-being, 2010 tactile signs agreed beforehand to and green spaces is a key to aid www.beyondblue.org.au) deal with tricky terrain.

Questionnaires and Interviews

After completing the first section of the Bibbulmun Track recently, all six deafblind walkers were approached to complete a questionnaire and to be interviewed on their personal experience of bush walking. Six out of six questionnaires were completed and five interviews took place (one of the walkers was about to move to the Eastern States).

Summary of responses to the Question Answer questionnaire: All six respondents started other forms of Have you been exercise to build up stamina eg. involved in other l Swimming Although Sharyn was no longer forms of exercise? l Gym walking with the group she reported l Additional walking that she was walking most days along the beach in her local area. Was the bushwalking l Overall goal – to walk Bibbulmun Track related to a goal you l To lose/maintain weight wanted to achieve? l To have a healthy lifestyle

Having individual personal goals Question Answer and the overall goal of walking the Have you been bush track gave the deafblind walkers Five deafblind walkers answered yes. a sense of achievement that walking regularly? motivated them to increase their When did you exercise routines. start regular 15 – 18 months ago bushwalking? How often have you Started fortnightly building up to weekly walks been bushwalking? in preparation for “big walk”

January 2015 • DbI Review • 15 ADBN Conference

Physical Health: a constant degeneration. You are erecting a tent and survival in the All six deafblind walkers reported always worsening.” bush. an improvement in their physical Five of the walkers acknowledged health and all reported weight loss. the benefits of bush walking in Social Participation At time of interview Rita was reducing mental health and a All deafblind walkers said their recovering from major cancer positive attitude. Likewise Sharyn social network had extended surgery. Medical staff indicated felt her involvement in the project through the walks, meeting other that Rita’s recovery was aided by at an organisational level was also walkers on the way, connecting her fitness levels associated with beneficial by having something to with the community through fund walking. focus on. raising and building friendships with The goal of completing the volunteers. Mental Health Bibbilumun Track is ongoing. Walkers were asked one final All six deafblind walkers said they question. Were there any additional had experienced depression. Sharyn Emotional Health challenges you faced? was open in her experience of All deafblind walkers reported Rita of course had serious health depression saying that “In the past, learning new skills such as problems that had challenged her and absolutely in the present and I leadership skills, teamwork, recently. would say in the future, it’s one of organisational skills in addition to David’s moved to Victoria just those constant effects because in the practical skills required such as after the first walk may present particular with Usher Syndrome it’s packing a back pack, bush etiquette, challenges for him to join treks in the future.

Question Answer

l Having good fitness levels aided recovery from major surgery for cancer l Reduced blood pressure l Reduced breathlessness Have you l Improved stamina experienced an l Increased energy levels improvement in l Physical strength aided recovery following your health since knee replacement surgery being involved in l Healthier eating bushwalking? l Reduced risk of diabetes l Recognition from GP of benefits of walking l Improvement in asthma symptoms l Reduced stress l Improved concentration

16 • DbI Review • January 2015 ADBN Conference

All reported having falls at different times George a bridge while walking ahead of the group to take said “When you walk along the bush and you fall, the photos, with little peripheral vision he missed the challenge is to get back up and you do that time and bridge fracturing his scapula. He returned to walking time again”. soon after. Limited access for emergency services On one of the practice walks Eddie fell 2m from meant it took 50 minutes for an ambulance to arrive.

To summarise: Through their involvement in the walks all deafblind walkers experienced: l Weight loss l Improved confidence and self-esteem l Health benefits l Motivation to continue l Working as a team l Support and encouragement from family and friends l Reduced isolation

and they said walking helps: l To take your mind off things l Socialising and interacting with other people l To feel part of a team l To sleep better As David said “The social element was a huge l To reduce stress part of building a strong bond to facilitate safety, enjoyment and laughter” l Increase independence in orientation and mobility l Influenced decision to have a guide dog Angela Wills l To keep active Deafblind Consultant, Senses Australia l A sense of belonging Email: [email protected] l Reducing isolation and loneliness l Having fun!

January 2015 • DbI Review • 17 ADBN Conference

A selection of pictures from the Conference

18 • DbI Review • January 2015 ADBN Conference

19 • DbI Review • January 2015 January 2015 • DbI Review • 19 Usher PreConference

Usher Syndrome PreConference

of the most cutting edge ‘Love, Life and Laughter’ thinking in the field of Usher. perfectly. One prominent member of The network were extremely our committee, Dr.Nadja grateful that Mark Dunning Hogner from Humboldt- from USA, and his daughter, Universitat zu Berlin was Bella could spend some time able to attend and give an with us in Belfast giving an insightful presentation on the informative talk on how things role of humour and the Usher are progressing stateside community. Attendees ranged and with respect to the from Usher professionals, Usher Syndrome Coalition2. medical consultants and At the end of the two days, specialists, family members, the audience participated in language professionals and group discussions about the more importantly several future of the Usher Network, Usher people who served giving the committee as great role models for the members lots of ideas to overall event. The seminars work and develop on. Watch Emma Boswell were held in the backdrop of a this space in the near future. relaxing and welcoming venue Also, Watch for activity on n unforgettable two and participants were treated our site on the DbI website: Adays, November 03 and to topics as far ranging as http://ushersyndrome. 04, 2014, the Usher Network Mental Health, Stress, lifestyle deafblindinternational.org Pre-conference successfully factors of Usher people, as On behalf of the committee achieved all the committee well as in-depth medical I would like to say a huge set out to do. Held in Belfast information. thanks to everyone for being Northern Ireland, with ten Medical expertise from an enthusiastic and engaging excellent presenters, the the likes of the prominent audience, as well as special Usher Network brought Professor Andrew Webster thanks to our presenters and together over fifty people and the latest in stem cell the other members of the 1 from around the world to research from Professor Maria network. This has been my meet, learn and listen to some Bitner-Glindzicz provided first taste of being on the Professor Andrew Webster much food for thought and committee and I have to say after dinner discussions. Of it has been an overwhelming course no Usher Conference experience, and on a personal would be complete without level I found it to be a an appearance from Megan rewarding and empowering Mann’s alter ego and Megan conference. did not disappoint! She provided a humerous start to For more information, her presentation by providing contact Emma Boswell, Chair those who wanted to, a tactile Usher Network (Emma. tour of her clown’s outfit, [email protected]) followed by an extremely engaging presentation representing the theme of

1 Countries represented included: Australia, Brazil, Canada, Denmark, Ethiopia, Germany, Ireland, Netherlands, Norway, Sweden, Russia, UK and USA 2 www.usher-syndrome.org

20 • DbI Review • January 2015 Usher PreConference

A selection of pictures from the Conference

“The Usher Network brought together over fifty people from around the world to meet, learn and listen to some of the most cutting edge thinking in the field of Usher”

January 2015 • DbI Review • 21 An emotional journey

Usher, an Emotional Journey1

uentin Crisp2, the English Qwriter once described life in the following way,

“You fall out of your mother’s womb, you crawl across open country under fire, and drop into your grave.”

What a jolly chap he must have been. However, his comments must be considered in the light of his experiences in life. He was a controversial character who was subject to bullying and Megan prejudice as well as fame and Mann fortune. Did his experiences negative response to those I spent some time with colour his view of life? From difficult situations. The theme four people with Usher – birth we start a journey, an of the Usher conference Ann, James, Angela and emotional journey through focused on life, the emotion of Jeremy who described their life and we will all, to some love and the physical reaction different journeys through degree, face adversity. How of laughter. Does having life experiencing love, life and we cope with adversity will limited sight and hearing laughter3. depend on many factors: our mean that love is more elusive personality, our relationship and that there is very little with others, our upbringing, Love and relationships opportunity to laugh? Should our support networks, our I heard from them first about that person’s journey be seen emotional and intellectual their different experiences through the eyes of Quentin development. Those factors with parental love and Crisp, as an arduous journey determine the difference relationships. In English we constantly under fire? between having a positive or have one word for love, in sign language there is one sign for love but going back in history to the ancient Greeks, it is worth noting that in their The theme of the Usher conference language they had at least “ five different words for love4, focused on life, the emotion of love depending on the type of love that was being shown. and the physical reaction of laughter” There was Agape love, which was love based on principle,

1 Paper presented at the Usher Syndrome PreConference, Belfast Northern Ireland, November 03-04, 2014 2 en.wikipedia.org/wiki/Quentin_Crisp 3 For the complete transcripts of their journeys, see the text of full paper “Usher, An Emotional Journey” on the Usher Syndrome Network subsite of the DbI website (http://usher.deafblindinternational.org) 4 http://en.wikipedia.org/wiki/Love

22 • DbI Review • January 2015 An emotional journey

an unconditional, selfless love “Before I got married I had is tested, when we are hurt extended to both friends and six theories about bringing and disappointed, and when strangers. Storge love referred up children, now I have six we experience loss. There to the love shown between children and no theories.” are times when life throws a family members. Philial love curved ball, when life seems to was love felt between friends, Laughter be upside down, back to front when that special connection It is often said that laughter and inside out. is made between two people is the best medicine. There resulting in a friendship that have been conferences on Life with Usher Syndrome lasts a lifetime. Eros was the laughter, research on humour presents unique challenges. romantic love in a partnership and articles on how it can Parents who have that first- which would hopefully, in have a positive impact on hand knowledge of their time, turn into Pragma love. mental health. There’s no children must be listened This was a mature love doubt about it, having a to. Information given at the born out of tolerance and good belly laugh can be time of diagnosis must be compromise leading to a deep good for the soul. However, clear. Ann, James, Angela and understanding and respect for psychologists would say that Jeremy have talked about each other. humour can also be used as a those challenges, how at defence mechanism against times humour has helped, and Finding a partner, someone negative feelings. An example how they have experienced to share your life with is of this is making a joke about different kinds of love. a tricky business for most something that has happened people. Developing that close to you, when the real feelings Forget Quentin Crisp and bond takes time and patience. might be deep shame or his painful trek through life I It’s not easy is it? The embarrassment. It may not much prefer the quote from 5 psychologist Erich Fromm be appropriate to use humour William Purkey who urged us said, if the problem really needs to all to: be dealt with and handled, “We spend too much energy rather than minimized or “Dance like there’s nobody on falling in love and need ignored. Some people might watching, to learn more about how to use humour to make the Love like you’ll never be hurt, stand in love.” unbearable bearable. It can Sing like there’s nobody Once you have found a be a useful coping strategy, listening, partner, at some point you as several of my contacts And live like it’s heaven on might want to consider indicated, to see the funny earth.” having a family. Parenting side of Usher and not to take is the most demanding, one self too seriously. confusing, challenging job Megan Mann that anyone could undertake. Senior Practitioner Acquired Life We seem to think that Deafblindness Sense UK parenting difficulties are a The Quentin Crisp quote ([email protected]) modern phenomenon but highlighted the fact that John Willmot6, a satirist and life has its challenges. friend of King Charles 2nd There are times when it’s once said, difficult to laugh, when love

5 http://www.brainyquote.com/quotes/authors/e/erich_fromm.html 6 en.wikipedia.org/wiki/John_Wilmot,_2nd_Earl_of_Rochester

January 2015 • DbI Review • 23 Usher Syndrome Community

The Importance of an Usher Syndrome Community1

sher syndrome is the life scenario and condition. passion and expertise of Umost common cause We are the holders of the families and prominent of deafblindness. It is an genetic cause of the disease. researchers from around emotionally devastating and We raise the awareness and the world in an urgent socially isolating disease. The the money that provides the movement to find a cure. vision loss is progressive so funding for research. Without We serve as a vital resource families deal with an ongoing the participation of Usher for people affected by Usher sense of grief. As vision families, researchers would syndrome, their families and declines in adults with Usher know nothing about the researchers. Our mission Syndrome, fewer of them are disease. is to raise awareness and able to work in competitive Yet we are in constant accelerate research for this jobs, causing a reported an danger of losing that most common cause of 82% unemployment rate connection between deafblindness. An Usher among those individuals. researchers and families syndrome community is our Such an example leads to because the scientific process most powerful tool. a loss of identity and self- is onerous. Researchers spend esteem leading to increased much of their time in the lab, International feelings of worthlessness and studying proteins, observing Symposium at Harvard higher rates of depression and mice, writing and reviewing Medical School suicide. papers. It is trial and error. But while the disease It takes a long time to get In July 2014 we saw may convey a sense of from the lab to something the power of the Usher worthlessness, people with worth testing in the clinic. So community at the Usher syndrome could it is easy for researchers to International Symposium not be more valuable to become estranged from the on Usher Syndrome held at society. People with Usher very families they are working Harvard Medical School. The syndrome are critical to to help. Symposium, July 10 and 11, finding treatments for The nature of Usher brought together the leading Usher syndrome. Clinical syndrome doesn’t encourage researchers in the world and trials on treatments for engagement from families Usher syndrome families from Usher syndrome would be either. Families are around the globe for a two suspended, abandoned, or devastated by the diagnosis. day scientific conference and simply not begun without the Transportation is more a one day family conference, involvement of people with difficult for individuals; it July 12. It was a huge Usher syndrome. People with is hard to navigate crowds. success. Families called it Usher syndrome are, quite Social interaction in dark “life-changing”. Researchers literally, the cure! or loud places is next to said “the presence of families impossible. Families with was excellent and achieved Usher Families are Key Usher are prone to withdrawal just the right balance and from the rest of society. perspective.” Families with Usher syndrome One of the main outputs are THE experts on the The Usher Syndrome Coalition2 seeks to build an from the symposium was disease. We experience Usher, a roadmap to help guide day and night, month after Usher syndrome community that brings together the investment in Usher syndrome month, in every possible research. As part of the

1 Article based on presentation at DbI Usher Network Pre-Conference, Belfast, November 03-04, 2014 2 www.usher-syndrome.org

24 • DbI Review • January 2015 Usher Syndrome Community roadmap discussion the world with Usher syndrome. Usher Coalition asked the We maintain an international researchers in attendance voluntary, Health Insurance what was the greatest barrier Portability and Accountability to treatment development. Act (HIPAA)3 compliant, Their answer was unanimous online registry4 that contains and it was not what you more than 700 families from might expect. They didn’t 40 countries. The registry is say that they lacked available in several languages. funding or that there were Joining the registry doesn’t insurmountable scientific mean a person is volunteering hurdles. No, when asked the for clinical trials; it ensures greatest barrier to treatment that we can inform them development, the leading about any trials. Researchers Usher syndrome researchers have no direct access to in the world said “We are not names in the registry. in touch with enough families Information about trials is with Usher syndrome.” The shared by the Coalition on reasoning is simple. behalf of the researchers. It is then up to the families to Mark Dunning than 1,000 likes, a Twitter6 contact researchers if they are and Bella So where does the Usher account with hundreds interested in a particular trial. Syndrome Coalition of followers, and a blog7 Keep in mind that come into this? called ‘the most thoughtful everything about the disease, exploration of Usher The science is advancing. We from the way the diagnosis is syndrome on the internet.’ are reaching the point where delivered to the psychosocial The Usher Syndrome potential treatments can impact, drives families in Coalition is there for families move from the lab to clinical to seclusion. So the Usher because families are critical trials. But clinical trials cannot Syndrome Coalition also to finding treatments. The be conducted without enough provides information and Usher Syndrome Coalition is candidates. Candidates mean support to individuals and there for researchers because people with Usher syndrome families affected by Usher researchers need a means and a huge pool of people syndrome. We run an annual to connect with families. But is needed to find enough Family Conference, the most importantly the Usher candidates for even a single next of which will be held Syndrome Coalition aims trial. Just because you have in New Orleans on July 11, to provide a better quality Usher doesn’t mean you are 2015. We have organized an of life for people with Usher a candidate for a particular International Family Network syndrome by building a clinical trial. You have to have that connects families from community that encourages the right genetic cause, be of over 20 different countries. ownership of the scientific the right age, have the right We run monthly conference process and provides them amount of vision, and have calls featuring talks from with the hope they deserve. the ability and the desire to the world’s leading experts participate. It takes hundreds live captioned and open to Mark Dunning of potential candidates anyone that wants to attend. Chair Usher Syndrome to find just a few that are The notes from the call are Coalition appropriate. read by almost 1500 people Parent of a child with Usher So one of the main goals of world-wide. We have a 5-star syndrome the Usher Syndrome Coalition Facebook5 page with more is to identify everyone in the ([email protected])

3 en.wikipedia.org/.../Health_Insurance_Portability_and_Accountability_Act 4 www.usher-registry.org 5 https://www.facebook.com/UsherSyndromeCoalition 6 https://twitter.com/ushercoalition 7 www.usher-syndrome.org/index.cfm/event/blog

January 2015 • DbI Review • 25 CHARGE Syndrome

Self-Regulation of emotion in CHARGE Syndrome

Benjamin Kennert1, Maria Ramirez2, Timothy S. Hartshorne3, Gail Deuce4, Jude Nicholas5

“I am starting to be stressed by people, situations, or environments intensify, diminish, prolong, this article. I wanted it completed on the basis of their likely or curtail ongoing emotional some time ago. As my emotions emotional impact. This strategy experience, expression, or get on edge, I become a bit requires an understanding of physiological responding (Gross, grumpy, and find that I am less emotional responses that can be 1998). For example, after a pleasant with the people around expected from interaction or lack challenging conversation with a me, particularly my co-authors. As of interaction with these people, person, saying to oneself “That I notice my feelings become more situations, and environments. For is an idiotic position to take, or aroused, I remind myself that this example, talking with a certain thing to say, but I do not have to is a group process, we are all busy, person always leads to heightened, be bothered by it,” could reduce we are making progress, and it negative emotion, and so you emotional arousal. will be good. Telling myself these avoid that person. During situation It is important to note that things helps me to relax a bit and modification, an individual modifies emotion regulation is used not calm myself down. I have lowered the environment to alter its only to reduce a negative level of my level of emotional arousal and emotional impact. If you cannot arousal, but also to intensify or am better able to focus on the avoid talking to that person, you prolong. In order to increase ones task at hand. I have self-regulated might bring a friend along with you motivation for doing well on an my emotions”. (Tim Hartshorne) to help you stay calm. Attention exam, a person might actively seek deployment is turning one’s to increase emotions of anxiety. The self-regulation of emotions is attention away from something in When discussing the self- a process that involves the analysis, order to influence emotions. You regulation of emotions, it control, alteration, or prevention are in a situation where there is is important to provide an of emotional expression and this person you do not want to talk understanding of what we mean experiences that are adaptive for a with, and so you make sure that by the term ‘emotion’. Emotions situation. Emotion self-regulation you are constantly engaged in talk occur when an individual evaluates may occur at different times with others. Cognitive change refers internal or external emotional relative to the emotional response. to the way with which we mentally cues, and this evaluation triggers Emotions may be regulated either appraise a situation to alter its a coordinated set of behavioral, by manipulating antecedents to emotional significance. This may experiential, and physiological emotional response tendencies or be done by changing how we think emotional response tendencies by manipulating responses to those about the situation or about our (Gross, 1998). These tendencies tendencies (Gross, 1998). capacity to manage the demand may be modulated, and this When focusing on manipulating it poses. Cognitive change requires modulation gives final shape to the antecedents to emotional strong cognitive self-regulation outward emotional responses. response, self-regulatory strategies skills. For example, one can mentally During emotion self-regulation, may include situation selection, prepare for having a conversation a person may increase, decrease, situation modification, attention with someone and tell oneself that or maintain positive and negative deployment, or cognitive change it will be “no big deal.” emotions (Koole, 2009). (Gross & Thompson, 2007). When focusing on the emotional An interesting study conducted Situation selection refers to response itself, self-regulation by Barrett, Gross, Christensen & approaching or avoiding certain strategies include those that Benvenuto (2001) showed that

1 Doctoral student Central Michigan University ([email protected]) 2 Doctoral student Central Michigan University ([email protected]) 3 Department of Psychology, Central Michigan University ([email protected]) 4 Children’s Specialist Services, Sense, UK ([email protected]) 5 Regional Resource Centre for Deafblind/Haukland University Hospital, Bergen, Norway ([email protected])

26 • DbI Review • January 2015 CHARGE Syndrome

Maria Ramirez & Benjamin Kennert individuals with more highly competence (Cicchetti, 1994; cognitive. According to Saarikallio differentiated and more intense Eisenberg, Guthrie, Fabes, (2010), the regulation of emotion negative emotional experience Shepard, Losoya, Murphy, Jones, is accompanied by the regulation reported greater emotion Poulin & Reiser, M. (2000). In of physiological and behavioral regulation, while positive emotional other words, impairments in processes related to the specific differentiation and intensity were emotion self-regulation affects emotion. Thinking about the unrelated to emotion regulation. children’s capacity to regulate situation one is in and what Sometimes our emotions can be their emotions, and emotion one wants out of the situation, kind of a mess and difficult to sort dysregulation in turn leads to influences the emotional arousal. out, but for those individuals who social difficulties. Difficulties with Thus, improved cognitive self- are able to be clear about what emotion regulation may result in regulation will result in a greater they are feeling, particularly in the psychosocial problems, such as ability to assess emotional case of negative feelings, self- high levels of negative affect and situations, monitor emotional regulation appears to be easier. escalation of anger, aggressive- situations, and respond using This suggests that the regulation disruptive behaviors, antisocial cognitive or meta-cognitive of emotions might be considered behaviors, addictions, suicidal strategies. In return, a stronger separately for positive and negative ideations, and mood disorders ability to self-regulate emotions emotions. This may be because such as depression (Wyman, will result in a stronger ability to negative emotions tend to have Cross, Brown, Yu, Q., Yu, X. & Eberly mentally assess a situation, and more immediate consequences if (2010). Emotion self-regulation respond with appropriate behavior. they are not dealt with. recruits less cortical activation in Developmental studies have the ventral-prefrontal cortex with Self-Regulation in CHARGE shown self-regulation to play a age, suggesting that individuals are Syndrome crucial role in children’s social better able to regulate emotions It is often difficult for children with age and development (Lamm with severe disabilities, including & Lewis, 2010). Activation of the Gail Deuce CHARGE, to develop self- ventral medial prefrontal cortex regulation skills, and challenging is associated with successful emotional outbursts are common. suppression of emotional responses Conditions that may contribute to a negative emotional signal to difficulty with emotion self- (Hänsel & Känel, 2008). regulating include multiple sensory Emotion self-regulation skills impairments, difficulty and delay in closely relate to the other language development, executive dimensions of self-regulation: dysfunction, communication physiological, behavioral, and difficulties, and poor health and

January 2015 • DbI Review • 27 CHARGE Syndrome

pain. Communication and sensory These children displayed difficulty children what it means when they information are important for with items measuring shifting from are feeling an emotion. Teaching a learning how to regulate through one activity or focus to another, feeling vocabulary to a child may experiences and feedback, and it tracking their own behavior and its be useful here. This could be done is likely that impairments in these effect on others, and controlling using scaffolding techniques, or areas contribute to poor self- their impulses and terminating breaking the process of recognizing regulation among individuals with behaviors as required (Hartshorne and responding to emotions CHARGE. Hearing impairment may et al., 2007). The authors report down into smaller, discrete tasks. cause difficulty processing new that about one third of individuals Modeling of emotions and how to information, answering questions, had difficulty on the emotional respond in specific situations, as and following directions, while control scale of the instrument, well as using role-play activities, vision impairment may cause and half had clinical scores on the is a useful method when teaching difficulty in processing facial behavioral regulation index. Thus feeling words and how to recognize expressions, imitating socially it appears that individuals with each feeling. When modeling acceptable behavior, and focusing CHARGE may have some difficulty emotions, mirroring feelings using on other visual stimuli. Learning with self-regulating their emotions. exaggerated facial and body how to interpret and express Due to the many challenges faced movements may help children emotions is highly dependent by these individuals, it may be understand how to recognize on how the experience is shaped difficult for someone with CHARGE emotions in other people. The through modeling, which is reduced to understand when they are feeling use of differential reinforcement by communication and sensory an emotion, what it is that they can be very effective in teaching problems. are feeling, and how to regulate appropriate emotional responses A study by Hartshorne, Nicholas, or control it. As DeGangi (2000) by rewarding positive, appropriate Grialou & Russ (2007) explored points out, early deficiencies in self- emotions in a situation and executive dysfunction among regulation may lead to challenging reducing negative, inappropriate children with CHARGE Syndrome behavior, and deficits in attention emotions. It is important to take using the Behavior Rating Inventory and inhibition. advantage of opportunities to of Executive Function (Gioia, teach a child feelings when they Isquith, Guy & Kenworthy, 2000). Intervention are noticeably feeling an emotion. The study confirmed the presence An important step in teaching When you know that a child is of executive dysfunction in over children to self-regulate their feeling happy, angry, or frustrated, half of children with CHARGE. emotions is first teaching those for example, this could be a good time to help them understand that emotion by modeling, and It is also important to teach the child how to by showing them appropriate “ responses to that emotion. Concrete respond in different situations and with different aids may help children understand or express emotions as well. people, and to help the child form secure stable (continued on page 30) relationships with as many people as possible”

28 • DbI Review • January 2015 CHARGE Syndrome

Case example

Before starting at a new residential school, Sarah, l Sarah struggled during role play, and so plastic age 14 and diagnosed with CHARGE syndrome, characters were used. Social scenes were enacted, had been excluded from school for two years as exploring different ways a person might respond a consequence of her difficult behavior. Some of in each situation. This was also used to re-enact Sarah’s issues were: situations that Sarah had found difficult, exploring l Regular emotional outbursts what might have been a more positive way of l Unable to tolerate being with her peers and being managing the situation. very easily annoyed or upset l Weekly yoga was introduced to help Sarah l Inappropriate attempts to initiate interactions develop and regulate her physiological state more l Saying hurtful and inappropriate things to others effectively. ‘Deep belly breathing’ became a useful strategy for Sarah to use independently to help her l Being very angry with herself, with a negative self- image and self-esteem calm. l Pet therapy provided Sarah with the opportunity l Lack of awareness of her own emotions – Sarah had an analytical understanding but was not able to enjoy caring for and nurturing Darcy the dog. to link this information to what she herself was l Discussing Sarah’s own emotional state. Initially feeling she found this extremely difficult, and staff who knew her well, labeled her emotional states for l Unable to negotiate or tolerate when things did not go her way her (e.g. “I think you are feeling a bit frustrated,” etc.). A break though came when Sarah was l Difficulty coping with the unexpected in conversation about a forthcoming trip and l Difficulty controlling her own behavior and suddenly said: “I’m feeling something”. Unable to impulsivity (saying “I just want someone to make label what she felt, the supporting adult explained me stop.”) she was probably feeling a bit excited and also anxious. A full team of practitioners were involved in developing a program to support Sarah, which was Now 18, it has taken time but Sarah has made regularly monitored and strategies developed or huge progress. She is a much happier young lady adapted in response. Some strategies developed to who is fully included in her class and making real support Sarah in this area were: friendships. She is much more socially aware and l Providing Sarah with her own space, with a able to socially engage, sharing a joke and coping gradual reintroduction to being in the room with with gentle teasing. Sarah is more in touch with her her peers. own emotional state and is better able to regulate l Ensuring a consistent routine, with any changes her emotions and behavior. Very importantly, Sarah kept to a minimum and every effort undertaken to is now able to talk about how she is feeling which prepare Sarah for changes. has proved to be vital as she has undergone a period l A highly individualized curriculum, using Sarah’s of ill-health requiring hospitalization and surgery. strengths and interests to build her confidence and Overall she has grown in confidence and is looking self-esteem. forward to moving on to college in the near future. l Modeling and discussing how Sarah might respond in different social situations. For example, in preparation for attending a local youth club, staff discussed with Sarah what was likely to happen; how to respond if someone said hello; how to initiate a conversation; how to move away if the situation became too much. A picture-board sequence was used to provide a concrete visual cue.

January 2015 • DbI Review • 29 CHARGE Syndrome

Examples of concrete aids may are likely to have a strong feeling, for the child to go to during an be using a color or face chart to you may begin to teach them how emotional response may help that describe feelings, or using a ‘traffic to engage or avoid those situations, child calm down. For children with light’ to describe the strength of or limit their emotional effect. significant difficulties, maintaining the feeling. For children with more When dealing with a feeling after a consistent environment and significant difficulties, repetition it occurs, practicing how to respond routine may also be important to may be important when teaching to feelings with the child or walking reducing inappropriate emotional about feelings. them through how to deal with the responses. However, it is also While teaching the child a feeling feeling will likely be helpful. It is important to teach the child how vocabulary is useful, strategies also important to teach the child to respond in different situations for reducing the strong, negative calming techniques when they are and with different people, and to emotions are necessary. When self- feeling a negative emotion. Calming help the child form secure stable regulating emotions, an individual techniques may include breathing relationships with as many people may either alter or avoid triggers techniques, exercise or mindfulness as possible. This will help the child’s that produce an emotional feeling, techniques such as meditation, Tai self-regulation skills to generalize to or alter the emotional feeling after Chi, or yoga, or having attachment new environments, situations, and it occurs. By helping children to or stress reduction objects available. people. recognize situations in which they Having a ‘safe place’ available

References Barrett, L. F., Gross, J., Christensen, T. C. & Benvenuto, Gross, J. J. & Thompson, R. A. (2007). Emotion M. (2001). Knowing what you’re feeling and regulation: conceptual foundations. In J. J. Gross knowing what to do about it: Mapping the relation (Ed.). Handbook of emotion regulation. New York: between emotion differentiation and emotion Guilford Press. regulation. Cognition and Emotion, 15:6, 713-724. Hänsel, A. & von Känel, R. (2008). The ventro- Cicchetti, D. (1994). Emotion regulation: Influences medial prefrontal cortex: a major link between the of attachment relationships. In N. A. Fox (Ed.). The autonomic nervous system, regulation of emotion, development of emotion regulation: Biological and stress reactivity? BioPsychoSocial Medicine 2, and behavioral considerations (pp. 228–249). 21. Monographs of the Society for Research in Child Hartshorne,T. S., Nicholas, J., Grialou, T. L. & Russ, J. Development, 59, (2–3, Serial No. 240). M. (2007). Executive function in CHARGE Syndrome. DeGangi, G. (2000). Pediatric disorder of regulation Child Neuropsychology, 13, 333-344. in affect and behavior: A therapist’s guide to Koole, S. L. (2009). The psychology of emotion assessment and treatment. San Diego: Academic regulation: An integrative review. Cognition & Press. Emotion, 23, 4-41. Eisenberg, N., Guthrie, I. K., Fabes, R. A., Shepard, Lamm, C. & Lewis, M. D. (2010). Developmental S., Losoya, S., Murphy, B. C., Jones, S., Poulin, R. & changes in the neurophysiological correlates of Reiser, M. (2000). Prediction of elementary school self-regulation in high– and low-emotion conditions. children’s externalizing problem behaviors from Developmental Neuropsychology, 35, 156-176. attentional and behavioral regulation and negative Saarikallio, S. (2011). Music as emotional self- emotionality. Child Development, 71, 1367–1382. regulation throughout adulthood. Psychology of Gioia, G. A., Isquith, P. K., Guy, S. C. & Kenworthy, L. Music, 39, 307-327. (2000). Behavior Rating of Executive Function. Lutz, Wyman, P. A., Cross, W., Brown, C .H., Yu, Q., Yu, FL: Psychological Assessment Resources. X. & Eberly, S. (2010). Intervention to strengthen Gross, J. J. (1998). Antecedent- and response-focused emotional self-regulation in children with emerging emotion regulation: Divergent consequences for mental health problems: Proximal impact on school experience, expression, and physiology. Journal of behavior. Journal of Abnormal Child Psychology, 38, Personality and Social Psychology, 74(1), 224-237. 707-720.

30 • DbI Review • January 2015 International Congress

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

he size of the population of enriched by an appearance by the Tpeople with deafblindness Heiligenbronn School’s band, ‘No should not determine the amount Guggies’, who thrilled the audience of effort expended on improving with their performance of the song quality of life outcomes. “Only For You” from the Wise Guys2. More than 180 national and The foundation has been international professionals, developing and expanding including speakers from five its offerings for people with countries, gathered at the St. deafblindness and dual sensory Francis Foundation (Stiftung St. impairment in an effort to become Franziskus)1 in Heiligenbronn, a center of excellence in the Germany. Over September 19 and field. The final meeting of the 20, 2014, these representatives European Union project ‘PropäK’ Dr. Peter Martin from the Séguin Clinic in Kehl-Kork during his presentation from the field of deafblind was expanded to include the about diagnosing pain in people with education examined multiple international congress “Deafblind severe, multiple disabilities perspectives, including medical Education Meets Medicine”, considerations, through lectures and which was co-sponsored by the workshops. Epilepsy Center in Kehl-Kork, Disabilities Commissioner also In opening the conference, Germany4. Consequently, additional greeted the participants. Assistant Foundation Director Hubert Bernard professionals and representatives of Director of the Ministry of Social quoted Helen Keller: “Blindness government ministries and agencies Affairs, Petra Clauss recognized separates us from things, deafness were also in attendance. in her welcoming address to the from people”. In her honor, The Minister of Social Affairs Congress: “We are paying close participants released balloons from Baden-Württemberg, Katrin attention to the interdisciplinary bearing inspirational sayings into a Altpeter, sponsored the Congress. exchange that is being cultivated bright blue sky. The gathering was Verena Bentele, the new federal here.” Related to the current government coalition agreement Participants in a workshop on the identity development of people with deafblindness in Berlin and discussions about attempt to gain some insight into their world by covering their eyes and ears. recognizing the category TBL (the German abbreviation for Deafblind) on disability identification cards, she assured the audience that people with deafblindness and dual sensory-impairment, as a specific population, have gained political recognition.

Special education should exclude no one Dr. Erwin Löhle, professor at the HNO Clinic in Freiburg, Germany4, reported that the issue of deafblindness has been introduced into the political sphere through

1 http://www.stiftung-st-franziskus.de 2 www.youtube.com/watch?v=0yVprFDmezA 3 www.epilepsiezentrum.de 4 www.hno-arzt-freiburg.de

January 2015 • DbI Review • 31 International Congress the efforts of the National Working In honor of Group on Deafblindness. Assistant Helen Keller Day, Director Sönke Asmussen from participants of the Baden-Württemberg Ministry the International of Cultural Affairs defended the Congress in Heiligenbronn approach of special education with released balloons the slogan “From Child to Program”. bearing inspirational The size of the population of sayings people with deafblindness should not determine the amount of effort expended on education and improving quality of life outcomes. The success of education for the German state of Baden- of a survey about educational children with multiple disabilities Württemberg, and the networking services for children and adolescents and deafblindness cannot be project PropäK. Deafblind educator with dual sensory impairment compromised: “Special education and Coordinator of Deafblind (vision and hearing). More than should exclude no one.” Services at the foundation, Dr. 80% of the cases of deafblindness Andrea Wanka , emphasized with severe intellectual impairment Atypical reactions to pain the importance of relationship- had never been diagnosed. The size Dr. Peter Martin, Clinical Director building, shared experiences and of this target group is most likely of the Séquin Clinic at the Epilepsy openness to emotional exchange underestimated. The presenters Center in Kehl-Kork, Germany, who in communication in general, but called for greater focus on the issue has also worked for many years especially with people with multiple of deafblind education. with residents of Heiligenbronn, disabilities, as seen in CHARGE Dr. Johannes Fellinger, Director presented a medical perspective. Syndrome. of the Institute for Neurology He discussed the diagnosis of pain Deafblind pastor Peter Hepp of Senses and Language in Linz, in people with severe, multiple from Rottweil, Germany, along with Austria, presented evidence disabilities: “Manifestations of pain a group of congress participants, that people with dual sensory must be taken seriously; Pain is a led an impactful prayer to St. impairment are often not correctly warning sign.” He urged greater Patrick using gestures and diagnosed as such. In their social sensitivity in working with this touch. Ulrike Broy, Director of connections, their hand becomes population, especially because their Deafblind Consulting Services, an important tool for relationship reactions to pain are not always spoke in her presentation “I see building and communication, but typical. myself speaking” about video one which requires additional time analysis as a tool for reflection, for processing. and communicative musicality as The program included eleven Other presentations a method of getting to know a workshops that were repeated The director of the foundation’s deafblind partner. throughout the congress. deafblind program, Roland Flaig, Professors Markus Lang and Klaus Many critical questions about did a presentation about the Sarimski and their colleague Elisa communication and identity were Heiligenbronn center of excellence, Keesen from the Heidelberg School adressed and expanded upon, such which serves people throughout of Education presented the results as the use of cochlear implants and audiology. In his closing remarks, The school band “No Guggies” from the Vision Services program No Guggies Foundation Director Michael Wollek declared the congress a success and predicted that the friendly atmosphere of the event would carry over into many other areas of practice.

Ewald Graf, Public Relations, Stiftung St. Franziskus Translated by Jim Witmer

5 Dr. Andrea Wanka is the Chair of the DbI CHARGE Network and Member of the DbI Board

32 • DbI Review • January 2015 ‘PropäK’

Conclusion of the First European Union Project on Deafblindness – ‘PropäK’

Exchange and innovation Participants increased of the closing meeting of What began in Heiligenbronn has the EU- ended here, as well – at least for sponsored the time being. The EU-sponsored project project to develop a network for professionals in the field of deafblindness in German-speaking countries, named “PropäK” (an abbreviation of the German words for ‘professionalizing educational However, due to the distances The ground was laid for a common concepts’), concluded at a final between them, the exchange training program. Transitions from session in Heiligenbronn, Germany, between international specialists school to work were also discussed. where it had initially begun1. had previously been very difficult. Meetings were held in Heiligenbronn Although a follow-up project, “PropäK and Hannover (Germany), Vienna II”, has already been applied for, the Meaningful momentum (Austria), Langnau (Switzerland) and discussion here was about “PropäK I”, The project partners set as their Kentalis (Netherlands). that is now completed. goal the improvement of initial and The organizations participating ongoing staff training. The original Shoulder to shoulder in this Leonardo Program-funded idea, which began in the still-new The Dutch partners presented a networking project included the deafblind center in Heiligenbronn, retrospective on the project with a St. Francis Foundation (stiftung st. received wide-spread support. slideshow accompanied by the song franziskus), which coordinated the “The effort was worth it”, said “Schouder aan Schouder” (Shoulder project, as well as the Deafblind Roland Flaig in the closing session, to Shoulder), which captured the Center in Hannover, Germany, the “the work has been enriching and emotional closeness that has Foundation for the Blind in Würzburg, created meaningful momentum.” developed among the participants Germany, the Dutch foundation The exchange of knowledge and of the project. During the closing Kentalis, the Swiss Tanne Centre of experiences has increased: “As I see session, the directors and leaders Competence for the Deafblind and it, our work with children, adolescents of the assembled organizations the Austrian Relief Organization and adults with deafblindness and expressed their thanks to the for People Who Are Deafblind and dual sensory impairment has become Heiligenbronn foundation for the People with Significant Vision and more transparent, the exchange project’s formation and organization. Hearing Impairments. Over the more international, the relationships Thanks to this relatively new course of the project, Oberlinhaus closer and the practice more firmly deafblind center, “new passion has in Pottsdam, Germany, and the rooted in theory.” been reawakened for all of us.” Gifts University of Groningen in the for the organizers further underscored Netherlands also joined as partners. Meetings in four countries their gratitude. Foundation Director Hubert Special competencies required The core team, under the direction of Heiligenbronn deafblind services Bernhard also added his thanks to the Roland Flaig, the director of coordinator, Dr. Andrea Wanka, Heiligenbronn team. The foundation disability services at the St. Francis reviewed the course of the project “is proud and grateful for your Foundation in Heiligenbronn since its beginning in September dedication” and for the inspirational outlined the formation and course 2012. Innovative approaches and atmosphere of the project. of the EU-sponsored networking concepts have been discussed project. Working with people with and further developed. A ‘search- Ewald Graf, Public Relations, deafblindness and dual sensory offer’ database was established Stiftung St. Franziskus impairment requires specific to enable the exchange of ideas. Translated by Jim Witmer knowledge and competencies.

1 See article reporting on the 2012 session in DbI Review, Edition 50, January 2013

January 2015 • DbI Review • 33 Perkins School for the Blind

Touch, explore, create:

Students prove artistic vision means so much more than sight. By ANNA MILLER

ourteen-year-old Mike dips a and experiencing something new.” Flong asparagus spear into a At a nearby table, Alexis, 7, grins cup of red paint. He transforms with delight as a teaching assistant the vegetable into a paintbrush, guides her hand to roll a blue-hued carefully making bold crimson lines ear of corn across a page. She on a pristine white piece of paper. giggles as she feels the kernels and He then takes a turn with broccoli, oozing paint beneath her fingers. stopping to ponder the texture in his hands before bouncing it Making art tangible contentedly to create splashes of Perkins art teachers are frequently vibrant purple. asked by the public, “How do you “Art is a really great way for him teach students who can’t see to to express himself, relax, unwind make art?” and just go for it,” said Sara The answer, they say, is simple: for that spongy, puffy texture. Martello, an instructor in Perkins make the art process a tactile, multi- On one particular morning, Lower Deafblind1 creative arts program, sensory experience. Use materials School students Amalia and Ethan, who orchestrated the painting-with- that a child who is blind, deafblind both 11, work on artistic journal vegetables-and-fruit project. or visually impaired can explore entries about their week. Noting Mike isn’t the only one enjoying through touch or smell. That can recent ferocious thunderstorms the art-making process. All of mean working with clay, making and unpredictable weather, Amalia his classmates are exploring the textural collages and quilts, and decides to cut a piece of smooth, materials as well, discovering even finger painting with pudding. shiny mylar to create a lightning textures that they may not have “Art instills in the students a sense bolt. encountered before. of self-esteem, and they enjoy “I’m going to make the “Art class is about the whole being able to work with their hands lightning big and long!” she said experience, rather than the finished to create something,” said Lower enthusiastically, leaning in close product,” Martello said. “It’s all School art teacher Rocky Tomascoff. to examine her work. She cuts out about touching different mediums “In here, we’re working on many of shapes for the sun and glues on Student Mike uses an asparagus spear the same goals, skills and objectives lightly teased, billowing cotton balls as a paintbrush. that they are in other classes; it’s for the clouds. just with different materials.” At a nearby table, Ethan recreates Nowhere is the diversity of on paper a new route that he materials more plentiful than recently learned to navigate in Tomascoff’s classroom. The across campus. He chooses red cabinets are chock-full of neatly felt to represent a school building stacked containers holding art and thick silver tape to construct supplies of all colors, shapes, sizes the sidewalk. Tomascoff initially and consistencies. One shelf is guides Ethan’s hand as he uses the devoted to a range of fine-grained scissors, and then she stretches the colored sands; another contains cloth out for him to divide down the a variety of split peas, macaroni, middle. Following her instructions, seashells and smooth sea glass. Ethan trims a few inches of fabric. One cupboard is filled with birdseed, “Good!” said Tomascoff pinecones, fragrant dried flowers encouragingly. “And cut!” and aromatic herbs. There’s even Ethan, completely focused on marshmallows, for when art projects the task at hand, snips away until – or a student’s imagination — calls a large square is cut out. He feels

1 Perkins School for the Blind is a large corporate member of DbI.

34 • DbI Review • January 2015 Perkins School for the Blind

Student Amalia cuts paper for her journal entry

Arts in Plymouth, Mass. Judges from Boston’s Museum of Fine Arts selected Perkins’ student work from more than 90 submissions by sighted and non-sighted artists throughout the state. Among them was Matthew, 16, a student in the Deafblind Program. He wowed the judges with “Feel the Rainbow,” a meticulously constructed mosaic that earned around for the sticky glue, and Tomascoff. “You strengthen those him first place in the mixed-media laughs with Tomascoff as he presses muscles. And there’s the added category. Matthew had diligently the felt flat onto the page. bonus, because at the end of the worked on the project for two Although Ethan and Amalia are day they have an art project that weeks, often carefully arranging working on art projects, they are they can feel proud of.” the composition with a huge smile practicing important skills along the across his face. way. They make their own choices, Award-winning artists “It was wonderful for Matthew communicate ideas and gain Students often take their projects to have that moment with his independence while using tools. home to share with their families artwork hanging on the wall with Both think about spatial concepts and friends. But in addition, the the big blue ribbon,” said Martello, and solve problems that arise. Lower School and Students in the Lower School, Deafblind Program Secondary and Deafblind programs each host an annual art all benefit differently from art show where everyone is classes. Teachers have found that invited to celebrate the nonverbal students are especially young artists’ creations. motivated to use symbols and Exhibit-goers are gestures to communicate while dazzled by hand-drawn making art. Other students superhero comic books, experience the soothing, endearing sculptures Student Shae examines a tactile quilt that his class therapeutic nature of creating and textural paintings designed artwork, they said. It helps anxious in every shade. Each students to relax, breathe and just piece of artwork expresses the beaming with pride as she recalled focus on the task at hand. For many, maker’s personality, and highlights the exhibition’s award ceremony. art class also happens to be a lot of students’ imaginations and “Everyone was cheering for him, and fun. abilities. he was over the moon.” For students to have a successful “People are very impressed that Instructors celebrate students’ and positive experience, teachers our students are able to produce every accomplishment, whether he adapt art projects to fit each child’s such wonderful artwork,” said or she wins an award or reaches out abilities. If a student is unable to Martello. Most importantly, she to touch a floret of broccoli for the maneuver a paintbrush against added, students feel a great sense first time. It’s all personal growth. a sheet of paper, an instructor of accomplishment. “You can see in “Art is a great way for students to may encourage him or her to flick all of their faces that sense of pride. express themselves and show what paint and fluffy shaving cream on ‘Look what I can do!’” they are capable of doing,” said a canvas instead. Students with Student talent is also gaining Martello. “It offers them a chance low muscle tone also can develop recognition off campus. Perkins to shine.” stronger hands and fingers during students recently received top the creative process. honors at “A Different Vision” art www.perkins.org/perspectives/ “It’s great when you are working exhibit, a juried tactile show held features/touch-explore-create. with clay, because you have to at the Plymouth Center for the html squeeze it, roll it and pinch it,” said

January 2015 • DbI Review • 35 Perkins School for the Blind

News and Resources from the Latin America and Caribbean Regional Office

of Perkins International e are pleased to share some We are proud to share our recent 4 Manual Technology4. This guide Wofthe developments of Documents: provides strategies for teachers and resources that can help to spread 1 Transition to Adult Life of parents to use technology in the the theme of deafblindness and Youth with Multiple Disabilities daily life for a child. multiple disabilities through the and Deafblindness1. This resource Spanish speaking population. highlights the main aspects of the Also from our website in Spanish, This year we have developed transition process and shares some we have added a new section called specific publications on topics of best practices in Latin America. 5 “Virtual Classroom”5, a place interest to families, professionals to share online courses, webinars and officer governments working 2 Guide for Inclusion of and educational videos on specific with children and young people. Children and Young People with topics. You can look up for new We could reach this goal with Deafblindness and Multiple resources and e-learning at: http:// the constant support of the Disabilities in Argentina2. This www.perkinsla.org/aulavirtual.php regional governments and private guide focuses on the best practices organizations such as Fundación which need to be considered to All these resources are aligned Once para América Latina (FOAL) guarantee successful inclusion. to meet the goals for education and Christoffel Blindenmission in the twenty-first century (CBM) . 3 Manual Physical Education3: This through engaging and working manual describes proper methods, collaboratively with professionals, materials and equipment to be family, educational authorities and 1 used with our population involved in the governments throughout the Physical Education. It has a chapter region. which focuses on health prevention. For more information The manual is useful for teachers contact Perkins International and families. Latin America at: [email protected]

3 5

2 4

1 www.perkinsla.org. Perkins Latin America is a small corporate member of DbI 2 www.foal.es 3 www.cbm.org. CBM is a large corporate member of DbI 4 See article in DbI Review Edition 53, July 2014 5 See article in DbI Review Edition 53, July 2014

36 • DbI Review • January 2015 Perkins School for the Blind

Michael Collins of Perkins named to Hall of Fame for Leaders and Legends of the Blindness Field

positive difference in the lives of Nandini Rawal, project director of children who are deafblind in the the Blind People’s Association in developing world, he enriched the Gujarat, India. lives of all of us. This is a fitting The Hall of Fame2 is dedicated honor and remembrance.” to preserving the tradition of In addition to his work with excellence manifested by specific Perkins, Collins also led Deafblind individuals through the history of International, served on the outstanding services provided to board of the International people who are blind or visually Council for Education of People impaired in North America. It is with Visual Impairment and housed at the American Printing founded the National Coalition House for the Blind (APH) in on Deafblindness. He received the Louisville, Kentucky, but belongs to distinguished Perkins’ Annie Sullivan all. Read more about Mike Collins in Award, Deafblind International’s Perkins Perspectives3 magazine. he late Michael T. Collins Lifetime Achievement Award and Perkins reaches nearly a million Twas inducted into the Hall of their Distinguished Service Award. people each year in 67 countries Fame for Leaders and Legends of Collins studied theology at St. providing education, services and the Blindness Field in Louisville, John’s Seminary in Boston and products to help people who are Kentucky, on October 17, 2014. earned a master’s degree in Special blind or deafblind build more Collins, who passed away in 2008, Education from Boston College. productive and meaningful lives. led education programs for children Collins will be most vividly Founded in 1829 as the first who are deafblind at Perkins remembered for the way he U.S. school for the blind, Perkins 1 School for the Blind for 30 years, touched the lives of individual advances its mission through including the supervision of Perkins’ children. “His love for children with its various divisions: School for renowned Deafblind Program. Most multiple disabilities and his deep the Blind, International, Library, notably, he launched Hilton/Perkins understanding of their needs was eLearning, and Products. Learn International to expand deafblind evident when he visited programs more at www.Perkins.org. education. Under his leadership, the and dangled children on his knee.” program grew from serving a few hundred students to reaching tens Michael Collins of thousands of children, families among his and educators in 67 countries. He students traveled the world championing education and government policies to improve opportunities for children who are deafblind and blind with additional disabilities. “Mike Collins represented what is best about humankind,” says Dave Power, CEO & President of Perkins. “He saw a need and went about the difficult and quiet work of solving it for three decades. By making a

1 www.perkins.org. Perkins School for the Blind is a large corporate member of DbI. 2 Ww.aph.org/hall/about.html 3 www.perkins.org/perspectives

January 2015 • DbI Review • 37 Perkins School for the Blind

Dr. Walton Alfonso “Aubrey” Webson1, MD

Named Antigua and Barbuda’s Permanent Representative to the United Nations and Head of the Antigua and Barbuda Office in New York

Prime Minister Browne (left) with Dr. Webson (middle) and Foreign Affairs Minister Charles Fernandez (right) following his presentation of the National Address at the UN General Assembly

Press Release: New York, services for children with Dave Ray to be the Diaspora NY, 28th September, disabilities. He has also Liaison Officer creating a link 2014… supported governments between the Diaspora and the and social workers in policy government. He said the move …Prime Minister of Antigua development. I am confident is designed to strengthen the and Barbuda the Hon. Gaston that he is very suitable for the relations with Antiguans and Browne has announced responsibilities entrusted to Barbudans in the Diaspora that Dr. Walton Alfonso him,” outlined Prime Minister and to have them play and “Aubrey” Webson has been Browne. active role in the development appointed as the country’s Prime Minister Browne also of their homeland. He said Permanent Representative introduced Dr. Webson to the aim is to have Dr. Dave to the United Nations as Antiguans and Barbudans Ray, as Diaspora Liaison Ambassador Extraordinary living in New York during a Officer, capture the issues of and Plenipotentiary. town hall meeting on Friday Antiguans and Barbudans in In a letter to Secretary in the Bronx. He told the the Diaspora and he will then General of the United over three hundred nationals liaise with the Antigua Office Nations, Prime Minister in attendance that Dr. in New York headed by Dr. Browne said the Dr. Webson Webson will be the Head of Webson. is an outstanding citizen of the Antigua and Barbuda Dr. Webson’s appointment Antigua and Barbuda who has Office in New York with the as Permanent Representative made significant contributions various department heads to the United Nations takes to the social development reporting to him under a new effect from 1st November, of people with disabilities arrangement which sees the 2014. around the world. Tourist Office, the Consulate “As a visually impaired and the Mission to the UN individual, Dr. Webson being merged as a single unit. has worked extensively During the town hall in Latin America, the meeting, Prime Minister Caribbean and Africa, Browne also announced that helping to shape educational an offer has been made to Dr.

1 Dr. Webson was a member of the DbI Board representing Perkins School for the Blind, a large corporate member of DbI.

38 • DbI Review • January 2015 Sense International

India to roll out vaccine against Rubella International (India) Working with deafblind people throughout India n a long-awaited medical experts have stated “We are delighted that the Idevelopment, India’s Prime in the British Medical Journal2 Indian Government taken Minister has announced that that ‘Rubella is endemic in this step. Rubella can be a a vaccine against rubella India’. devastating condition and we has been added to India’s The rubella vaccine is hope that, like in many other Universal Immunisation one of four new vaccines parts of the world, the threat Programme. to be added to India’s of rubella will recede once the As readers of DbI Review immunisation programme3– immunisation programme is will not need to be reminded, the others being Japanese fully established.” if a pregnant woman catches Encephalitis, rotavirus, and rubella then the effects can be polio (injectable). With devastating. A child born with these new vaccines, India’s The government will now Congenital Rubella Syndrome UniversaI Immunization “ (CRS)1 may have hearing and Program4 will now provide ensure that the benefits of vision impairments, heart free vaccines against 13 life problems, learning disabilities threatening diseases, to 27 vaccination reach all sections and other health problems. million children annually. To prevent women who Prime Minister Narendra of the society, regardless of are pregnant from catching Modi said: “India is social and economic status rubella from someone else committed to tackling child ” the rubella virus needs to mortality and providing be eradicated from the health for all. Strengthening The World Health population as a whole – and routine immunisation is Organisation estimates the only way to do this is by an essential investment in that there are more than vaccination. It is estimated India’s children and will 100,000 children born with that nearly 2,000 babies are ensure a healthy future of the birth defects as a result of born with congenital defects country. CRS every year in developing each year in India. Therefore “Many of these vaccines countries. this announcement of an are already available through Prepared by: Colin Anderson, immunisation campaign is a private practitioners to Publishing Manager, Sense huge boost in the battle to those who can afford them. (Colin.Anderson@ eradicate rubella. The government will now sense.org.uk) The numbers of young ensure that the benefits of For more information, women in India who are vaccination reach all sections contact James Thornberry, susceptible to rubella infection of the society, regardless of Sense International and of children born with social and economic status.” (James.Thornberry@ congenital rubella are hard Akhil Paul, Director of Sense senseinternational.org.uk) to evaluate. However Indian International India5, said:

1 www.who.int/mediacentre/factsheets/fs367/en 2 www.bmj.com/content/349/bmj.g4844/rr/761918 3 http://www.gavi.org/Library/News/Statements/2014/India-to-introduce-four-new-vaccines/ 4 www.gavi.org/about/governance 5 www.senseintindia.org. Sense International India is a small corporate member of DbI. 6 www.who.int

January 2015 • DbI Review • 39 Sense International

Rubella vaccination spreads

There has been encouraging progress in the introduction of the rubella International vaccine – with important initiatives in Tanzania and India this autumn. (India) Working with deafblind people throughout India

The children lined up for their vaccinations he World Health delivered in Tanzania and seven children and was TOrganisation estimates East Africa. Tanzania has a born with congenital rubella that more than 100,000 population of 45 million and syndrome. She has no sight or children are born in is the sixth most populated hearing and needs round the developing countries each country in Africa. clock care from her mother. year with birth defects as a The campaign targeted As a result, her mother is no result of Congenital Rubella all children aged between longer able to work and this Syndrome. Currently just over 9 months and 15 years old. has affected the family’s 130 countries out of 193 More than 12,000 schools income and plunged them in deliver the rubella vaccine. and 6,600 health facilities to poverty. were involved in just over a The vaccine is being Mass vaccination in one-week period, making it delivered as part of the Tanzania a huge logistical challenge. WHO’s implementation of the Thousands of health care Global Measles and Rubella In October, 21 million professionals, volunteers Strategic Plan 2012 – 20201. children were vaccinated and NGOs were involved in Prepared by: Colin Anderson, against rubella and measles helping to spread the word Publishing Manager, in Tanzania. The campaign and getting the vaccine out. Sense (Colin.Anderson@ was one of the largest public Reaching rural communities sense.org.uk) health campaigns ever and ensuring that parents One of the largest public understand the dangers of For more information, “ rubella is key to uptake. contact James Thornberry, health campaigns ever For the parents of children Sense International like Chausika, this is welcome (James.Thornberry@ delivered in East Africa” news. Chausika is one of senseinternational.org.uk)

1 www.who.int/.../Measles_Rubella_StrategicPlan_2012_2020.pdf

40 • DbI Review • January 2015 Sense International

Educating deafblind children within their communities in East Africa International Stevie Kent, Senior Programmes Manager at Sense International (India) Working with deafblind people throughout India or the first time ever, for deafblind children being and train local mainstream Fdeafblind children in systematically violated. teachers and parents how to East Africa are accessing The result of this combined provide holistic education and education from their local effort was the development of therapy for deafblind children mainstream school. This is Community Based Education at home. A home-based no small milestone given (CBE) for deafblind children, curriculum has been specially that until now governments with a pilot programme developed in each country, and teachers alike insisted now being implemented in paving the way for similar that children with complex Kenya, Tanzania and Uganda approaches for other excluded disabilities like deafblindness – funded by the Big Lottery groups of children. cannot be educated through Foundation in the UK2. What is so unique about the mainstream system. Existing special schools this approach is that unlike A few lucky children were have been transformed most Community Based enrolled in special schools into resource centres with Rehabilitation approaches, but the vast majority simply multi-disciplinary teams where NGOs are used to missed out on an education. of educational and health deliver home services, this To solve this problem Sense professionals assessing approach utilises existing International (East Africa)1 deafblind children and, state infrastructure and had to think outside of with the input of parents, human resources to provide generally accepted practices developing Individual non-formal education but and engage parents, teachers, Education Plans for each child. following a standardised and government officials Additional special needs curriculum and set of quality to innovate together – and teachers have been posted to standards. No longer will find a solution to put an end each resource centre in order home-based services have to to the right to an education to go out into communities come to an end when project funding runs out. This pilot programme will reach 900 deafblind children Rehema and their families (5,400 people), and is building the CBE has already changed ten-year-old Rehema’s life. She capacity of nine resource has been enrolled at Mukuru Kwa Njenga Primary school in centres, 99 special needs Kenya under the care of teacher Samuel Isaboke. He visits teachers and 900 mainstream to her home at least three times a week to support her teachers to deliver CBE. The parents in educating her. mainstream teachers’ role is In line with the holistic approach of CBE, Rehema has key as they support parents been provided with physiotherapy sessions three times by helping them to make in a week to complement the therapy being provided by lessons for the children out of her parents and teachers. Her mother comments: “Sense everyday activities, based on International has helped my daughter a great deal. My the curriculum and Individual daughter’s life has been transformed by this project. Education Plans. Rehema’s communication skills have improved and she is The results of this pilot making very good progress in her mobility skills too.” programme are impressive

1 www.senseinternational.org.uk. Sense International is a small corporate member of DbI. Sense International (East Africa) has programs in Kenya, Tanzania and Uganda. 2 www.biglotteryfund.com

January 2015 • DbI Review • 41 Sense International but Home Based Education is regions of East Africa to access an only the first stage. Once the appropriate and quality education deafblind child has developed from within their own communities sufficient communication skills, the – so that children no longer miss out mainstream teacher will gradually on the education and therapy they start to include them in school need to achieve their full potential activities and lessons. in life. We are working with governments to provide classroom teaching For more information about assistants to facilitate this next Sense International, contact stage in the process. Ultimately our Sense International at info@ aim is for every deafblind child in all senseinternational.org

Editorial (continued from page 3) Once again, DbI Review magazine led to an important public policy ADBN conference. Their Network features another paper in the series change in the large state of São production of the Helen Keller story of CHARGE Syndrome articles Paulo that ensured that deafblind provided the entertainment for the from Dr. Tim Hartshorne and his students have the right to a guide opening night of the conference. associates. It should be noted that interpreter or an intervenor to Special honours were bestowed Dr. Hartshorne is another parent support their inclusion in regular on two past members of DbI who of an individual with a sensory schools throughout the state. In represented the Perkins School for related disability who has taken on Hungary, through the efforts of the the Blind. The late Michael Collins, a significant professional role in the Hungarian Deafblind Association former President, was posthumously deafblindness field. (SVOE), the government included enshrined in the Hall of Fame Sense International, a co- deafblindness as a category for Leaders and Legends in the sponsor of the upcoming DbI in their 2011 National Census. Blindness Field. Aubrey Webson, World Conference, has several Consequently, they were able to who served briefly on the DbI Board, international and ground-breaking determine the number of individuals was named Antigua and Barbuda’s articles featured in this edition. with deafblindness in the country Permanent Representative to the Two articles in particular report necessary to provide necessary United Nations and Head of the on the long awaited introduction information for developing their Antigua and Barbuda Office in New of the rubella vaccine in the sub- service plans. Similarly, the Republic York. We thank them both for their continent of India and in Tanzania, of Ireland published an article titled contributions to DbI. East Africa. Other articles include: ‘Deafblindness in Ireland’ providing Finally, DbI Review is pleased to a report on educational programs the Anne Sullivan Centre with the once again have a sponsor – this for deafblind children in East Africa; opportunity to raise awareness of time Sense (UK) supported the a highly successful approach in Deafblindness in Ireland and to publication and distribution of this Peru that resulted in deafblindness campaign for the improvement of edition. Check out their colourful being now recognised by law in that services. advertisement near the end of country, and Cristiana Solomie’s The magazine would not be the magazine. We hope other inspiring story (see Country reports) complete without reports from organizations may offer some detailing the journey taken by the various Networks. Check out degree of sponsorship for future Sense International (Romania) to new plans for a conference in the editions. improve the lives of children with report from the Communication On a personal note, this is the deafblindness in her country. Network. Follow the activities of 10th edition that I have had the It’s always special to read the one of our newest networks, the privilege of being editor. Thanks so Country Report section to hear Youth Network. Don’t hesitate to much to the many contributors and about the significant progress taking contact Simon to obtain a copy to the DbI Board for its continued place. Take Brazil for example, of their recent publication ‘A support. with the report from Grupo Brasil Collection of Inspirational Stories’ that explains how their efforts which was launched at the recent Stan Munroe

42 • DbI Review • January 2015 Sense International

“Everyone is in the sphere of power”

How Sense International (Peru)’s1 strategic approach to advocacy meant that deafblindness is now recognised in law. International (India) Working with deafblind people throughout India his article describes and the full implementation communication plan Tthe strategic goals and of the rights for deafblind (including key messages, activities developed by Sense people in Peru. Everything had definition of brand, use of International (Perú), which to emanate from the needs images etc.) led to the creation of Law and demands of deafblind 6. Agreement on the indicators N° 29524. This recognised people and their families and we would use to monitor the deafblindness as a distinct be directed by a core group process. and unique disability for of key stakeholders who the first time – and set out worked together to form the Objectives provisions for the care of necessary critical mass. Sense Because the existing law deafblind people. This success International (Peru) built on on disability (Law N° 27050 has led to the development this platform to develop its “General Law of Disabled of a series of private-public advocacy strategy with: Person”) did not recognise partnerships to deliver 1. A clear definition of what deafblindness in any form, programmes and services we wanted to achieve, there was extremely limited as defined by the deafblind 2. The identification of allies, statistical data on the needs people. opponents and adversaries, and numbers of people who 3. Clearly distinguishing were deafblind2. The first Summary and defining the proposal requirement of our Advocacy “Everyone in the sphere of from among the different Campaign therefore, was power” was the core principle alternatives to achieve recognition of that Sense International 4. Agree on the approach and deafblindness as a unique pursued in order to achieve activities, and specific disability – and its goal of getting recognition 5. Agreeing on a strategic to identify the specific

1 www.senseintperu.org. Sense International (www.senseinternational.org.uk) is a small corporate member of DbI. 2 The First National Survey of Disability, in the country, was developed by the National Institute of Statistics and Informatics (INEI) in 2012, where it is determined that there are 1 575 402 people with disabilities in Peru, which means 5.2 % of the total population. file:///C:/Users/User/Downloads/resultados.pdf

January 2015 • DbI Review • 43 Sense International

requirements of deafblind individuals, as opposed to those with other sensory disabilities.

Our partners & our approach The second step was to influence and involve key actors who could identify with the cause and were opinion leaders and especially those with senior decision making power. Following the development of a layered stakeholder analysis and their legislation. Following this a crucial prerequisite to start agreed approach, in 2008 lobbying exercise we received working at national level and we utilized our close contacts a formal request to prepare to involve more personalities and allies within the Peruvian the draft law for recognition – such as the Congressman Parliament to obtain a of deafblindness as a single of the Republic and President series of meetings with Mrs. disability. This draft was of the Special Commission Auriestela Obando, Chair then discussed and adopted on Disability of Congress, Mr. of the “Fifth Committee on by the Andean Parliament Michael Urtecho Medina, who Social Affairs and Human and, subsequently, published is also a disabled person. Development of the Andean with the Decision N° 1217 in Parliament”. the Gazette of the Andean At this point, Peru had Our proposal Parliament by June, 2008. recently ratified the United Based on the concept of This was a significant Nations Convention on “legal capability” which strategic achievement. the Rights of People with should guarantee respect The decision by the Andean Disabilities (UNCRPD)3 for the dignity, freedom and Parliament called upon and was one of the first autonomy of persons with its members (the Andean countries to do so. The disabilities, covered in article Community of Nations; climate for advocacy for 3 of the UNCRPD4, Sense Bolivia, Colombia, Ecuador, the rights of people with International (Perú) convened Perú and Venezuela) to disabilities was therefore several workshops and individually adopt legislative, very positive. In the meeting meetings of young people executive and administrative we discussed how important and adults with deafblindness measures that would lead it is that deafblindness that allowed us to collect and to the national recognition is recognized – and the consolidate proposals that of deafblindness as a consequences for individuals came from their demands, single disability – and to of its absence in national needs and life expectations. call on them to implement legislation. An important On 24th June 2008, the specialized services to meet part of this lobbying was first draft of the Peruvian the needs of this group of also to share experiences Bill on the recognition of people in social policy areas from the Parliaments of deafblindness as a unique such as education, health, the European Union, Spain disability was presented employment promotion and and Columbia which all by a group of 20 young human development. recognize deafblindness in people with deafblindness As said, this precedent was

3 http://www.un.org/disabilities/convention/conventionfull.shtml 4 Article 3 principles of the present Convention shall be: to) respect for inherent dignity, individual autonomy, including the freedom to make their own decisions, and the independence of the people. This Convention was issued by the United Nations and ratified by the Peru on January, 2008.

44 • DbI Review • January 2015 Sense International

For us this confirms: the sustainability of our approach towards deafblindness, the quality of our relationship with key ministries, and the success of our initial strategic approach.

Lessons The unique way to achieve a positioning of deafblindness in our country has been through the process identified earlier in points 1 to 6 above. Once the goal had been in the Peruvian Congress of For instance, with the determined, critical to our the Republic – being finally Peruvian Ministry of success has been the situation approved and published in the Education, a nationwide analysis and understanding official journal “El Peruano” on survey was conducted into the advocacy environment May 2nd, 2010, as the Law N° alternative communication as well as the identification 29524. systems. This led to the of opportunities to influence recognition and validation decision makers and to Following actions of seven alternatives change legislation. Through the search for spaces where This Law was a watershed communication systems for deafblind people. the voice of deafblind people moment in the achievement can be heard, to ensuring of our objective “of obtaining Furthermore with the Ministry, SI Peru has developed and that SI Peru had the skills and recognition as well as the capacity to deliver support full implementation of the delivered a series of tailored education training programs once the legislation had been rights of deafblind people passed we recognise that in Peru”. Not only did the specifically addressing the skills development of special building and working closely national legislation recognize in partnerships with key deafblindness as a unique needs education teachers, the development of deafblind stakeholders was critical to disability and regulate for enhance our capacity and to the provisions for the care of materials and curriculum adaptations. put the plan into action. deafblind people in Peru, it It is true that the work also recognized the official Recently, evidence of our advocacy success came when has really just begun and communication systems the challenges ahead are (sign language, Braille the Ministry of Education appointed Mrs. Genoveva many and varied. However, and Dactilology), and also we know that the quality of recognized the obligation to Mejía Farro as the first Latin American specialist in the the organization, planning, provide guide interpreters for mobilization and proposal deafblind people. field of deafblindness in the General Direction of Special will have a direct impact on With the new law and, deafblind people’s lives and subsequently, its regulations Education. At the same time we are now developing a their families, so that they can approved by Supreme Decree achieve their goals. N° 006-2011-MIMDES, series of similar strategic Sense International (Perú) activities with other national Ministries including: the Kiomi Parraga, Project continues to engage and work Assistant, Sense constructively with public Ministry of Health, the Ministry of Labour, and the International (Peru) sector groups to help them to For more information fulfil their legal obligations. Ministry of Women and Vulnerable Populations. contact Ricardo Zevallos ([email protected])

January 2015 • DbI Review • 45 Country news

Brazil Another Public Policy Victory by AHIMSA in the State of São Paulo, Brazil

Perseverance, secret of all triumphs1 (Victor Hugo)

n Brazil it is mandatory Ithat all children be enrolled in school. However only the schools in a very few cities, mainly the large metropolis’, offer specialized services. We Shirley Maia and Vula Ikonomidis recognized over a decade ago that inclusion was the answer understand that this type of In 2012 the State Secretary to provide specialized services professional could provide the of Education of São Paulo3 for all students throughout necessary support to ensure promoted a Regional Forum4 Brazil. Unfortunately our full inclusion of students with where Shirley Maia and teachers did not have the deafblindness and multiple Claudia Sofia from AHIMSA necessary qualifications or sensory disabilities in regular participated in 11 seminars received any training to teach schools in Brazil. that reached a total of over students with multiple sensory We are pleased to say that 4000 professionals involved disabilities. hosting the 15th DbI World in education, including With this in mind, a group Conference in Brazil in 2011 teachers, school managers of professionals from AHIMSA has led to very fruitful results and municipal secretaries of (Educational Association for inclusion programs for education. These information for Multiple Disabilities) our multiple sensory disabled sharing sessions assisted the and part of Grupo Brasil2 students. Since receiving educational authorities to visited Canada in 2004 the support from local properly identify the students to learn more about their governmental agencies for (with sensory disabilities) intervention services program hosting that event, providing that were already in schools and the professionals called service for deafblindness and but not receiving proper Intervenors. From this multiple sensory disabilities is education for their disability experience in Canada, the now more visible in our local due to the lack of knowledge AHIMSA group came to educational programs. about their condition and

1 http://izquotes.com/quote/89081 2 www.grupobrasil.org.br. Grupo Brasil is a small corporate member of DbI. 3 www.educacao.sp.gov.br 4 See DbI Review Edition 51, July 2013

46 • DbI Review • January 2015 January 2015 • DbI Review • 46 Country news

Brazil continued

appropriate educational be able to reach out to more needs. states in Brazil ultimately to As a result of these have a nationwide agreement efforts, the State Secretary for this necessary support of of Education of São Paulo intervenors in the education published in their official of people with deafblindness journal two years later and multiple sensory on November 12, 2014, a disabilities. Persevere and resolution5 that deafblind you shall triumph! All you students and students with need to do is Believe and act multiple sensory disabilities accordingly have the right to a guide- interpreter or an intervenor Shirley Maia and Vula to support their inclusion in Ikonomidis regular schools throughout the state of São Paulo. This is For more information, a major victory! Once publicly contact: vula2004@ acknowledged in our state hotmail.com and throughout Brazil, we will

5 Resolution SE 61, 11-11-2014: Provides for Special Education in the school units of the state school system:

Article 10 – in order to provide the necessary support to students of Special Education, enrolled in classes of elementary or high school education, in any form of education, the school may have the following professionals: I – interlocutor teacher of Brazilian Sign Language (LIBRAS), admission as regulated by Resolution SE 38/2009 to act in the condition of interlocutor in LIBRAS, of the school curriculum, between the regular class teacher and the deaf student / hearing impaired; II – teacher translator and interpreter of Brazilian Sign Language (LIBRAS), bearer of one of the qualifications requested for teacher interlocutor of LIBRAS, in the Resolution SE 38/2009 and qualification in one of the disabilities requested, to act as translator or interpreter of the school curriculum, between the regular classroom teacher and the deafblind student; III – teacher intervenor, bearer of a full degree with qualification in one of the disabilities requested, with the objective to intermediate the school curriculum, between the regular classroom teacher and the student who may present multiple sensory disabilities in addition to deafblindness or physical disability. IV – caregiver, according to the Terms of Conduct Adjustment signed between the Public Ministry / Government / SP ( São Paulo) and the Secretaries of Education and Health to act as provider of services in the following situations: a) when required and authorized by the family; b) for students with disabilities whose limitations entail permanent or temporary difficulty in school routine, and who cannot perform, independently and with autonomy, among others, activities related to feeding, oral and personal hygiene, use of bathroom, locomotion, and the administration of medicines with prescription and expressly authorized by the responsible, except in the event that this activity is private to nurses, under the specific legislation.

January 2015 • DbI Review • 47 Country news

Brazil IIIº International Seminar on Deafblindness continued and Multiple Sensory Disabilities

s part of celebrating 15 Ayears as an organization, Grupo Brasil1 held its third seminar on Deafblindness and Multiple Sensory Disabilities, October 27-30, 2014. This Deafblindness and Multiple (USP). was undertaken in partnership Sensory Disabilities. The three In addition to the keynotes with the University São Paulo round tables were titled: 1) and round tables, the seminar – USP2 and with support Public Policies for Educational included such workshops from São Paulo Research Services for Students as: Communication with Foundation, FAPESP3. The with Deafblindness and Congenital Deafblindness; theme of the seminar was: Multiple Sensory Disabilities. Communication with Acquired ‘School inclusion and Assistive Participating in this round Deafblindness; Working Technology for people table were representatives with Families and Accessible with deafblindness and from the Municipal and State Resources and Low Cost multiple sensory disabilities’. Secretaries of Education, the Technology. One hundred and fifty Municipal Secretary on the The seminar concluded with professionals from throughout Rights of the People with presentations from Grupo the state of São Paulo and the Disabilities and Reduced Brasil’s numerous partners states of Espirito Santo, Rio de Mobility and the National highlighting the success Janeiro and Pará participated Secretary on the Promotion stories of the Grupo Brasil in the event. of the Rights of the People network. These included: with Disabilities; 2) The l Two presentations from Importance of Families as São Bernardo do Campo Communication Partners. – one about specialized Leading these discussions educational services were Dr. Susana Aráoz offered during home (Rondônia), representing visits for students unable the Brazilian Association attend school due to of Parents and Friends health conditions; the (Abrapascem) and Dr. Isabel other a collaborative team Amaral (Portugal); 3) Building presentation outlining The program featured Isabel Amaral Possibilities for Collaborative how the entire school keynote presentations and presenting Work between Universities (specialized teacher, round tables. The two key and Institutions. Participants education coordinator and note speakers were: Dr. Maria leading these discussions school director) worked Bove (University of Vermont4 were: Dr. Isabel Amaral closely with the family – USA) lecturing about (Portugal), Dr. Maria Piedade to offer full inclusion to the ‘Bridges for Inclusion 5 Costa (Universidade Federal students with disabilities. Project’ and Gloria Gil 7 de São Carlos- UFSCAR ), Dr. l Presentation by the School (Perkins International6 – USA), Maria Bove (USA), Gloria Gil for the Blind in the city speaking about Assistive (USA) and Dr. Karina Pagnez Angra dos Reis (Rio de Technology for People with

1 www.grupobrasil.org.br. Grupo Brasil is a small corporate member of DbI. 2 www.usp.br 3 www.fapesp.br/en 4 www.uvm.edu 5 http://www.eapn.pt/bridgesforinclusion 6 www.perkins.org/international 7 http://www.ufscar.br

48 • DbI Review • January 2015 January 2015 • DbI Review • 48 Country news

Brazil Janeiro State) about Social, 28-31, 2015 in partnership continued Educational, and Family with the Federal University Inclusion in that city. of Santa Maria, Rio Grande 16 l Presentation about the do Sul . The theme will Acquired Deafblindness be focused around Guide- Program offered in the Interpreters, Intervenors Institute Benjamim and Assistive Technology. 8 Constant , Rio de Janeiro. l The VIº International l Report about Ahimsa’s Forum, will be organized (Educational Association in partnership with for Multiple Disabilities)9 University of São Paulo – USP, November (dates experience with its Family and proposals for new to be determined), Partnership Program. projects and partnerships to 2015. The theme will l Presentation from the foster the inclusion of people be: ‘Holding Hands in Daniella Forchetti Dance with deafblindness and 10 Health, Education and Group about Social and multiple sensory disabilities in Rights of the People with Cultural Inclusion. Brazil. The hope was that this Deafblindness and Multiple l Presentation of Denise Villas experience would enhance Sensory Disabilities’. The Boas’ Doctoral Research further involvement by the IXº National Meeting on titled: “The quality of Universities to carry out Deafblindness and Multiple interactions with children more research and studies to Sensory Disabilities will be with deafblindness and support the actions carried held along with this Forum. multiple sensory disabilities” out by Grupo Brasil. As an l Presentation about the outcome of this seminar, we training Courses (online) in are planning future events the areas of deafblindness in partnership with more and multiple sensory universities in 2015. disabilities organized by Dr. Susana Aráoz at the Planned events for 2015 University CEULJI/ULBRA11 l The IIIº Virtual Latin (Rondônia). American Forum is being l A presentation by a organized with the Federal professional from the Helen University of Alagoas14 Keller Bilingual School (Maceió, Alagoas State), 12 for the Deaf , São Paulo April 28 to May 3, 2015 in about History Studies honor of the late Michael undertaken by a student Collins15. Note: anyone Shirley Maia, Grupo Brasil with deafblindness with the interested in sharing (www.grupobrasil.org.br) support of an educational information with us at 13 For more information, guide-interpreter . the forum please contact contact [email protected]. In conclusion, the ([email protected]) l The IVº International experience from this seminar Seminar will be held July motivated new discussions

8 www.ibc.gov.br 9 Ahimsa is a compnent of Grupo Brasil 10 daniellaforchetti.blogspot.com 11 www.ulbrajp.edu.br 12 http://surdohk.blogspot.ca 13 Teachers for the deaf who have taken the guide-interpreter course for acquired deafblindness. 14 www.ufal.edu.br 15 The late Michael Collins, a former President of DbI, was inducted into the Hall of Fame for Leaders and Legends of the Blindness Field. See article in this edition of DbI Review. 16 www.ufsm.br

January 2015 • DbI Review • 49 Country news

Canada Accessibility standards

ounded in 1989, DeafBlind Why develop and The Accessible Design FOntario Services1 is one incorporate these Guidelines section is a very of the largest not-for-profit standards? detailed oriented section that organizations in Ontario highlights standards for the providing Intervenor, The objective of using these Bathroom, Bedroom, Exterior residential and other standards is to increase Spaces, Kitchen, Laundry specialized services to functionality, safety, Room, and Living and Dining individuals who are deafblind independence and overall Room. Each section provides in communities throughout accessibility for those with measurement specifications the province of Ontario, varying abilities. for accessibility, safety Canada. In the fall of 2014, considerations and material DeafBlind Ontario Services The Guide is divided into recommendations. launched their Accessibility three sections: The DIY section (Do-It- Standards Guide after The Accessible Design Yourself) Accessibility and a thorough accessibility Guidelines and Quick Orientation Enhancements assessment of its own Design Tips sections of section is intended to share residential locations. the guide were researched additional projects and The purpose of the guide and written by an external products that can increase the is to share standards and resource; Lesley MacDonald accessibility and functionality provide helpful tips that of Pretium Anderson of the of the environment/ focus on establishing (Pretium Anderson Building activity. inclusive environments for Engineers, Universal Design individuals with varying Consulting Services2). Lesley’s Accessible Design sensory loss. Inclusion background knowledge and Resource of accessible standards experience includes 25 years The Accessibility Standards and design emphasizes of experience at Canadian Guide is an essential resource efficient environments, National Institute for the if you are a builder, member space maneuverability, the 3 Blind(CNIB) , development of an accessibility committee importance of illumination, of CNIB’s ‘Clearing Our Path or government agency, or and the use of colour, texture Universal Design Guidelines work in a recreation centre, and specialized materials to for the Built Environment’ and retirement/nursing home or name a few. a Master’s in Orientation and other facility or if you support Mobility. someone with sensory loss. Get your FREE copy at www. deafblindontario.com.

1 www.deafblindontario.org; and say Deafblind Ontario Services is a large corporate member of DbI 2 www.c3group.com/Pretium-Anderson 3 www.cnib.ca

50 • DbI Review • January 2015 Country news

German Federal Commissioner Germany Verena Bentele learns about services for persons with deafblindness

erena Bentele1, Federal center of excellence for from Berlin and her mother, VCommissioner for people with deafblindness, Monika Bentele, who had Disability Issues, visited the former student, who accompanied her. Principal the St. Francis Foundation2 attended the residential and Dietmar Stephan described (Stiftung St.Franziskus) in school programs from 1988 the expansion over the past Heiligenbronn Germany to to 1994, also reunited with a 20 years of the former school learn about the Foundation’s former teacher and residential for the blind into a support services for people with care provider, Sister Margitta center for children with deafblindness. Years ago, Pitz. Verena Bentele said that blindness, visual impairments, Ms. Bentele was herself she was very pleased about deafblindness and multiple a student at the school meeting with ‘old friends’ disabilities. Most notably, for the blind and visually again and she noted that consulting services for early impaired in Heiligenbronn. the school had “contributed intervention and school The Foundation’s director, greatly” to her personal collaboration have become Hubert Bernhard, called it “an growth. ever more important in a honor that you have come Hubert Bernhard reviewed large catchment area. In here to learn about our work”. the history and development addition to the 20 students In addition to meeting with of the convent and the with deafblindness who are leaders of the Foundation’s foundation for the visitor included in classes at the

Group photo of meeting with Federal Commissioner (3rd from right and Andrea Wanka 4th from right

1 Verena Bentele is a former German biathlete, cross-country skier, four-time world champion and twelve times Paralympics gold medal winner (http://de.wikipedia.org/wiki/Verena_Bentele) 2 http://www.stiftung-st-franziskus.de

January 2015 • DbI Review • 51 Country news

Germany continued

school in Heiligenbronn, 74 participation in political Roland Flaig presented children and youths with discussions, to gather specific Commissioner Bentele with combined hearing and visual insights into the daily lives of an original set of the printed impairment are supported by people with disabilities. booklets. She also received Heiligenbronn’s consultants Roland Flaig, director the booklet abstracts in across the state of Baden- of services for persons Braille and an accessible Wuerttemberg. with disabilities, and version on DVD, which is Dr. Andrea Wanka3 Nadja Urschel reported on also commercially available. presented about the center European networking in Roland Flaig also thanked of excellence for persons the field of deafblindness the two editors for their with deafblindness and its and a project initiated in commitment and presented numerous projects. Ulrike this context: the translation them each with a portrait Broy, director of consultation of the fundamental work painted for them from a services, and Beate Schork, ‘Communication and photograph by a Dutch artist director of the department for Congenital Deafblindness’4, with deafblindness. students with deafblindness, originally written in In his closing remarks, English, which has recently Guenter Seger, director of Roland Flaig also thanked been made accessible for the services for persons “ German speakers in the with disabilities, spoke the two editors for their field of deafblindness. The about the importance of text of the four booklets the code ‘deafblindness’ on commitment and presented encompasses 472 pages identification cards for people has been translated into with severe disabilities. This them each with a portrait German by an expert in the code indicates eligibility for United States. Ulrike Broy special services, as well as for painted for them from a and Nadja Urschel, both staff financial support for persons members of the St. Francis in this category. Seger asked photograph by a Dutch artist Foundation, took on the task the federal commissioner with deafblindness of proofreading and revision to lend her support to ” during their parental leaves. this issue. Verena Bentele The booklets have been thanked everyone for all of reported on communication printed and distributed by the information and told development and the social publisher Edition Bentheim5. the audience how impressed learning of children with Aktion Mensch6, the Kniese she was by all that she had dual sensory impairment. Foundation in Berlin and experienced. They shared some of their the Hermle Foundation in everyday experiences and Gosheim subsidized the costs Ewald Graf, Public Relations, answered many of the federal for translation and publishing, Stiftung St.Franziskus commissioner’s questions. as well as for the development Verena Bentele emphasized of a staff training program Translated by: Jim Witmer how important it is for her based on the booklets. and Ulrike Broy

3 Dr. Andrea Wanka is the Chair of the DbI CHARGE Network and member of the DbI Board 4 Booklets prepared by the DbI Communication Network (www.deafblindinternational.org/ccd.html) 5 www.edition-bentheim.de 6 https: // www.action-human.com

52 • DbI Review • January 2015 Country news

Hungarian Deafblind Association Hungary Siketvakok Országos Egyesülete

ince 1994, the Hungarian SDeafblind Association has been working to increase the quality of life for deafblind people in Hungary by representing their interests through advocacy and other service provisions. We took many steps, large and small, in the last twenty years towards meeting these goals. We are pleased that new services have been founded and new ways of support have appeared. We are confident to say that the opportunities for the deafblind have improved The Association has three methods developed for significantly relative to the divisions of responsibility: deafblind people. situation twenty years ago. l An Advocacy and l An Elementary and The Hungarian Deafblind Information Office Vocational Rehabilitation Association is the only responsible for Advocacy. Service Division organization in our country l A Communication Support At the moment, the that provides rehabilitation, Service responsible for the association is in contact with communication support Interpreter-guide service approximately 400 people and advocacy for deafblind and the dissemination of living with deafblindness. people. special communication

January 2015 • DbI Review • 53 Country news

Hungary continued

The 2011 census to include deafblindess living with both blindess/ Hungarian Census on the list of distinct visual impairment and disabilities identified in the with hearing loss/deafness: The Hungarian Deafblind 2011 census. 12,685 persons Association, along with other The 2011 census data was The two diagrams below disability groups, started talks summarized into the following depict the distribution in 2009 with the (former) two categories related to according to age. Please national government about deafblindness: note that the small numbers the need to identify more 1. People defining themselves in the lower age groups are precisely the number of as living with deafblindness: probably due to the fact that people living with different 3,262 persons one cannot be diagnosed types of disabilities. These 2. People who did not define with deafblindness but might successful talks led the Central themselves as living with receive early care according to Statistical Office which is deafblindness, but as major type of disability. responsible for the national

1. People living with deafblindness, according to gender and age (Central Statistical Office, 2011)

0-14 15-19 20-29 30-39 40-49 50-59 60-64 65-69 70-79 80- Total

56 24 62 61 115 279 165 123 341 522 1,748 68 37 79 111 130 313 177 138 242 219 1,514

124 61 141 172 245 592 342 261 583 741 3,262

2. Number of people who claimed to live with visual impairment / blindness and hearing loss / but did not classify themselves as deafblind, according to gender and age (Central Statistical Office, 2011)

Age 0–14 15–19 20–29 30–39 40–49 50–59 60–64 65–69 70–79 80+ Total group

Women 25 8 34 91 169 685 473 515 1,781 4,209 7,990

Men 18 22 58 106 211 647 430 403 1,165 1,635 4,695

Total 43 30 92 197 380 1 332 903 918 2,946 5,844 12,685

54 • DbI Review • January 2015 Country news

Report into Deafblindness published Ireland in Ireland

ntil recently, no large- request was sent from the Uscale research had Anne Sullivan Centre to the ever been conducted into Central Statistics Office (CSO), Deafblindness in Ireland. for a special cross-tabulation Estimates of the number of these data to ascertain of people affected by the the number of people who disability were not available had indicated they were and very little was known both hearing and vision about the situation of people impaired. For the purpose of living with dual sensory loss in the analysis, Deafblind was the Irish context. In October defined by the CSO as, “a 2013, the Anne Sullivan combination of Blindness or Centre1, in association with a serious vision Impairment Deafblind Ireland2, attempted and Deafness or a serious to change this. hearing Impairment”. Further To begin with, statistical correspondence with the nationwide including the information from the 2011 CSO provided an additional National Council for the Blind National Census3 was breakdown of the number of Ireland (NCBI)4, DeafHear5 reviewed. Question 16 of people who were Deafblind in and other intellectual the Census was a seven-part specific age categories in each disability services. question aimed at gathering county. information on the prevalence In an effort to discover In total, 103 surveys were of disability in Ireland and more, a National Registry of returned for analysis by April proved an invaluable resource. people who are Deafblind 2014. They indicated that: The data collected indicated was established. Information l At least one third of the that there were 51,718 for the registry was gathered Deafblind population in people with ‘Blindness or a using short surveys mailed to Ireland are over the age of serious vision impairment’ people identified as having 65, representing the largest and 92,060 people with a combination of vision and diagnostic group within the ‘Deafness or a serious hearing hearing loss, by both the Anne Deafblind population impairment’ living in Ireland. Sullivan Centre and other l Age Related Deafblindness, In November 2013, a cooperating organisations Usher Syndrome, CHARGE

Summary of Results The results of the Special cross tabulation indicated that, based on 2011 statistics: 1,749 people are Deafblind in Ireland (CSO, 2013). 1050 of these are over the age of 65 and 699 are under the age of 65. 518 of these lived in Dublin, our capital city. This figure is equivalent to approximately 57 people in every 100,000

1 www.annesullivan.ie. The Anne Sullivan Centre is a small corporate member of DbI. 2 www.deafblindireland.org. Deafblind Ireland is a small corporate member of DbI. 3 www.cso.ie/census 4 https://www.ncbi.ie. NCBI, the national sight loss agency, is a not for profit charitable organisation which provides support and services nationwide to people experiencing sight loss. 5 https://www.deafhear.ie. DeafHear has a national network of resource centres providing a range of accessible services to Deaf and Hard of Hearing people and their families and is also actively involved in advocating and lobbying for improved services and new developments

January 2015 • DbI Review • 55 Country news

Ireland continued

l Almost two-thirds of people l Further research into the who are Deafblind live with area of Deafblindness family. Fewer than 15% live which includes greater alone and almost 20% live consultation with people in a residential care facility. who are Deafblind and l 55% of people who are their families to provide Deafblind are not in receipt the information necessary of any services6. to plan and develop appropriate services for While further consultation the growing Deafblind with people who are population Deafblind and their families is needed to fully assess The Anne Sullivan Centre the situation, the following is using the publication of recommendations have the report to raise awareness been proposed to advance of Deafblindness in Ireland the rights of people who and to campaign for the are Deafblind, based on the improvement of services. findings of this report. We hope that the National l A campaign for Awareness Registry will continue to grow and Enabling Legislation in numbers and will provide that includes, but is not the foundation for a strong limited to, lobbying for Deafblind community in Official Recognition of Ireland. Deafblindness as a separate Finally, we would like to take and unique disability in this opportunity to thank all the Irish context and the of the Deafblind International adoption of the European members who contributed to Syndrome and Congenital Union’s Written Declaration the research – either directly Rubella Syndrome are 1/2004. by responding to an email and the leading causes of l The establishment of a offering advice or indirectly Deafblindness in Ireland. strong support network of by being a guiding light for l Almost 20% of the people who are Deafblind, research into Deafblindness. Deafblind population their families and the We hope that you find the have a diagnosis of Usher professionals working with results both interesting and Syndrome. Of these less them to advocate for the informative. If anyone would than one quarter are group at local and national like a copy of the report or engaged with a service level have any questions, you can contact the author of the provider. l The development of report l 90% of Deafblind children Deafblind Specific Services and young adults have that meet the individual one or more additional needs of the diverse Laura English (lenglish@ disabilities. population of people who annesullivancentre.ie) are Deafblind

6 People who participated in the research were asked if they had access to a) Residential Care, b) Respite Care, c) Day Service, d) Visiting teacher for the Deaf/ HI or Blind VI, e) Personal Assistant, f) Special Education School , g) Other – 55% did not receive any of the above or indicate they received a service from ‘other’.

56 • DbI Review • January 2015 Country news

CHARGE Syndrome: an Italian experience Italy Patrizia Ceccarani, Director of the Rehabilitation Center, Lega del Filo d’Oro, Osimo, Ancona, Italy

he Lega del Filo d’Oro1 Tin Osimo is a non-profit organization for people with multi-sensorial impairments. In collaboration with the Pediatric Clinic of the Institute of Maternal-Infantile Sciences in Ancona, Italy we take care of about 60 patients aged between 0 and 35, from all over Italy that are clinically diagnosed with CHARGE syndrome according to the classification described by Blake et.al, 19982. We consider that our caseload is Sciences Institute in Ancona, cognitive and motor profiles representative of the Italian in collaboration with the using an Italian questionnaire population of people with Lega del Filo d’Oro in Osimo called “Progress Guide”. CHARGE syndrome. (Italy), has been taking care Our main results show that With this in mind, a study of 35 patients with clinical Italian CHARGE patients have was carried out based on and molecular diagnosis more delayed development 35 of the identified patients of CHARGE syndrome. Our in their physical abilities or and published (online) in investigation is the largest skills with respect to normal the American Journal of Italian cohort study of patients. In particular, Medical Genetics (2014 CHARGE patients. CHARGE the delay is statistically Dec;164(12):3042-51. doi: syndrome is a multiple significant in regard to self- 10.1002/ajmg.a.36758. Epub malformation syndrome care skills (worse at toileting; 2014 Sep 24): involving ocular coloboma, better with washing) and Cognitive-Motor Profile, heart defects, choanal atresia, the communication skill Clinical Characteristics retardation of growth and/ (language). On the other and Diagnosis of CHARGE or development, genital hand, their expressive skills are Syndrome: An Italian anomalies and/or urinary and still preserved. When patients Experience. ear abnormalities which leads are considered according to Lucia Santoroa4, Anna to visual–auditory disabilities, their age (≤3 years) and (>3 Ficcadenti4, Federica cognitive impairment and years), the older ones have Zallocco4, Giada Del Baldo4, behavioral abnormalities. more delayed development Francesca Piraccini5, Rosaria Our purpose is to expand the than the younger ones when Gesuita5, Patrizia Ceccarani1 knowledge of this syndrome compared with healthy and Orazio Gabrielli4 by reviewing this group of individuals of the same age. affected patients in order to Abstract delineate in detail the natural For more information Since 2005, the Pediatric history of the disease, and contact Patrizia Clinic of Maternal-Infantile in particular to define the Ceccarani (ceccarani.p@ legadelfilodoro.it)

1 www.legadelfilodoro.it . Lega del Filo d’Oro is a large corporate member of DbI. 2 Blake K.D., Davenport S.L., Hall B.D., Hefner M.A., Pagon R.A., Williams M.S., Lin A.E.&Graham J.M. CHARGE association: an update and review for the primary pediatrician. Clin Pediatr (Phila) 1998; 37: 159–73. [PubMed] 4 Division of Pediatrics, Department of Clinical Sciences, Salesi Hospital, Polytechnic University of Marche, Ancona, Italy 5 Center of Epidemiology, Biostatistics and Medical Information Technology, Polytechnic University of Marche, Ancona, Italy

January 2015 • DbI Review • 57 Country news

Jordan Portraits from the Deafblind Program at The Holy Land Institute for Deaf in Jordan

en children and two adults are living, staying and learning in the Deafblind program of TThe Holy Land Institute for Deaf1. Each one of them is unique and special; it is a pleasure for all the hearing and Deaf staff to be part of their development and see each day even their smallest progress. A speciality of our Deafblind work is that it takes place in an institute for Deaf and Deafblind children. Some of the older Deaf students assist the Deafblind children as part of their vocational training. That enables them to leave behind their own disability and experience the joy of helping someone else in need. As our Deafblind Unit has been expanded with a part of a new building for the Deafblind, the children have found much fun in the new sports facilities. Here they do exercises and one or the other can show their abilities. It is also a great pleasure that we can play outside on the new roof terrace.

Murhaf or eating and has learned to Issa walk. Murhaf loves to put all Issa, 13 years old and blind kind of things he can reach or since his birth, has been several touch into his mouth. years at the school. With his aphasic symptoms and has Hadiel not started to speak and is hence educated as Deafblind. Issa loves to listen to music, to play for hours and to touch things (preferably those that Murhaf five years old is the are soft ). He comes from a youngest boy in the Deafblind loving and well-to-do family, Unit. He is from a very poor who however do not know family, who care with much how to educate their son and love for him. When Murhaf to teach him things. He has came to us three years ago, now learned to walk and to he could neither walk nor express himself with simple communicate in any manner. signs. The educators always Meanwhile he understands Twelve year old Hadiel is one speak to him and meanwhile also a few signs like drinking of the most active Deafblind he understands a few spoken children in our facility. With instructions and can execute her high spirits and joyful these. The nicest thing is character she keeps her when Issa starts to hum. He teachers always on the go. manages a few melodies, She likes to eat sweets and which makes the people to turn around in a circle. around him always very happy. Hadiel understands about 25 signs and in comparison with other Deafblind children she has a very good sleeping cycle. Sometimes when she becomes very nervous, she cries then a lot and rejects any contact, which can be Deaf student Samer looks after very stressful for the people little deafblind Murhaf around her.

1 www.cbm.org/programmes/The-Holy-Land-Institute-for-the-Deaf-292846.php (CBM is a large corporate member of DbI)

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Jordan continued

Hanady Rahmeh Rahmeh was born premature at 6 months and because of this she is Deafblind. She experiences painful problems with her eyes which were replaced by small light blue glass eyes. She has some hearing in one ear which results in her love for music. Hanady with her Deaf teacher She loves to jump on the William (American volunteer) and Iman on a trip to Aqaba trampoline. She is a very Hazem at rinsing unobtrusively calm girl, who Hanady is already 53 is much loved by the other Repeatedly, Hazem’s teacher years old. She came in the Deaf students. When she has encourages the parents to beginning of last year for nothing to do she likes to click learn more sign language the first time to the school with her tongue. because at home the parents after her mother had passed only use the simplest signs for away. She was already Deaf “eating” and “drinking”. But as a child and on top of that Hazem understands much became blind when she was more than these signs. As he twenty. It is amazing how well can hear in one ear a little, she is keeping up at her age he likes to sit down and listen and how well she manages for hours to a CD-Player or the sign language. She is a singing toy. As soon as he accompanied each day by becomes bored, he makes her Deaf teacher Iman, who noises like “wua wua wua” trains her with Braille, moving to get the attention of the around with the blind stick Hazem teachers. It’s always very etc. She is very happy to be Hazem is 14 years old, totally nice to see Hazem when he is here and that she can now blind but with some residual happy, then he laughs aloud live in the boarding school hearing. He comes from a and shows his happiness by with the Deaf girls. very loving family who cannot moving his right handback communicate with him. and forth like he would throw a ball.

January 2015 • DbI Review • 59 Country news

Jordan continued

Mohammed Kawthar smile on her face. She is one Mohammed is seven years of the smartest children in the old, blind and Deaf. He is still Deafblind Unit, who is making very new in the school and still good progress. She likes to expresses himself very weakly. play the most with a soft Because he has very weak toy and her favourite food is muscles and cannot yet walk, a dish of rice. Moreover she he is always moved around in comes from a lovely family a small wheel chair. who cares so much about her and tries to turn the good advices of the teachers into practice.

Due to a premature birth, 9 year old Kawthar is Deafblind and in addition of a weakness But the Deaf students and in her muscles. When she the teachers care lovingly came for the first time to the for him and try to teach him institute, she could neither sit many signs. His main activity up nor walk. First she learned consists of moving his delicate to sit and then needed a little fingers back and forth wheel chair for some years. In and to play with small cuddle the meantime she has learned animals. to move about and each step is a success and a joy for everybody. Kawthar is a very Kawthar exercises walking quiet child; is seldom nervous assisted by our Deaf teacher Asma in the gym. Currently, and most of the time has a Asma studies Deafblind education at the Perkins Institute in Boston.

Brother Andrew de Carpentier Deaf student Fathmeh shows Executive Director Mohammed his daily program The Holy Land Institute for Deaf and Deafblind, SALT, Jordan Email: [email protected]

60 • DbI Review • January 2015 Country news

From one word – to an inspiring story Romania Cristiana Salomie describes the ongoing journey that Sense International (Romania) has taken since 1998

ntroducing deafblindness national authorities led to a One year later, I(surdocecitate) into the surprising and hard-to-believe representatives from Romanian language was conclusion: “there are no the Ministry of National a long and winding road children with deafblindness in Education were invited to for Sense International Romania”. It was obvious that visit the classes. They met (Romania). It all started talking about deafblindness the children and they saw the back in 1998, when a team was not enough; something obvious progress they made of experts from Sense came had to be done to prove in only one year. This was to Romania to assess the to the national and local enough to convince them situation of children and authorities that these children that educating children with adults with deafblindness. did exist and that they need deafblindness was not only They came into contact with specific education services, in possible, but crucial for their me, Cristiana Salomie, who an adequate environment. development. A Partnership was at that time working for The first two classes Agreement was signed, the the British Red Cross, which were established in 1999: government committing to led to a long and fruitful one in Bucharest, at the support the education of collaboration. Discussions with Kindergarten for Children with children with deafblindness, Hearing Impairments and using newly created Sense Training course another in Cluj Napoca, at International (Romania)’s the High School for Children technical expertise. with Visual Impairments. By 2006, there were now Each class had four children, 13 classes, where 52 children identified and assessed by with deafblindness were Sense specialists. At the same receiving proper education time, six special education services. A team of Romanian teachers were selected to national trainers in the field learn everything there was to was created to meet the learn about how to work with future needs of the education these children. system.

January 2015 • DbI Review • 61 Country news

Romania All these efforts – combined their families and became Integration. It was further continued with intensive lobby and involved in facilitating the recognized with the following advocacy work at the national auditory screening of 70,000 awards: the Recognition level – made it possible new-born babies and the Award, the Practitioners’ for Sense International visual testing of 13,000 Award and the Excellency (Romania) to ensure that babies. Award for Implication in the deafblindness was included in Education of Children with the Romanian legislation. What we do. Special Needs, received during Four important initiatives EARLY INTERVENTION – We the Edumanager.ro Gala in were to follow. support the rehabilitation 2013. 1) Deafblindness was and recuperation of recognised as a distinct newborn babies with sensory “The quality of life for disability in the Law no. 448 impairments in Bucharest, people with deafblindness enacted in 2006. Oradea, Iasi and Timisoara. has significantly increased 2) A special Curriculum for since SI(R) began working the Education of Children EDUCATION – We support in the field. Now, there is with Deafblindness was the education of pupils with someone fighting for laws, included in the national deafblindness in Bucharest, for our protection and, most education legislation in Buzau, Cluj Napoca, Craiova, importantly, for the future of 2008. Falticeni, Galati, Iasi, Oradea, children with deafblindness 3) The National Education Sibiu, Târgu Frumos and who need an education.” Law was revised in 2011 to Timisoara. Mr. Vasile Adamescu, a clearly state that children deafblind man who is a with deafblindness must VOCATIONAL TRAINING special education teacher be educated in classes of – We support young people and writer maximum 4 children and with deafblindness from Arad, importantly by special Bucharest, Galati, Iasi and “Every moment spent education teachers trained Timisoara to learn a trade with the staff is a pleasant in the field. in vocational workshops, memory, as with them we 4) Early Intervention for so that they may lead found the balance we needed Babies with Multisensory an independent life after and the strength to keep Impairments became part finishing school. fighting. We thank them for of the Romanian legislation Sense International being there for us! in 2013. (Romania)’s strategic Mrs. Anuta Banda, mother of approach to working in Darius, a deafblind boy Where we are now? partnership with During these 14 years of the state, rather activity, Sense International than creating (Romania) has ensured alternative services rehabilitation, recuperation, which are difficult early intervention, adequate to sustain, was education and vocational internationally services for 750 children and recognized during young people. It has provided the 2009 ERSTE counselling and guidance to Awards for Social

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Romania continued

Liliana Mitran Cristian Buica Amalia Fodor

“Because my main “I believe SI(R)’s priority Slovakia, Hungary, Slovenia, responsibility within the over the next years should Croatia, Kosovo, Macedonia, Ministry of National Education be the development of Montenegro, Serbia, Moldova, is to coordinate the entire vocational services for children Ukraine and Russia to come special and special integrated and young people with together and share expertise, education at national level, deafblindness, an initiative knowledge, best practices and I continue to rely on SI(R) which they started back in concerns through a regional to be a key resource in the 2012 following the successful network to promote the rights field of deafblindness for grant of 50.000 Euro from of people with deafblindness. children parents, teachers and Orange Foundation. Romania will be hosting the authorities.” Mrs. Amalia Fodor, Director 16th Deafblind International Mrs. Liliana Mitran, General of Orange Foundation World Conference, May 25-30, Inspector for Special and Romania, one of Sense 2015, the first time that the Special Integrated Education International (Romania) world conference is taking in the Ministry of National most important donors place in Eastern Europe. Local Education solutions to common needs, What is our future? Why learning and education, “SI(R) has become, since not a regional network? identity and belonging, 2001 until now, an example advocacy and recognition – We at Sense International of best practices in the these are the key elements (Romania) believe there are world of non-governmental that the 2015 conference will issues specific to Central and organisations involved in bring to the table. Eastern Europe when it comes improving the quality of life Organised by Sense to deafblindness. for people with disabilities. International and Sense We are absolutely positive The positive impact in the life International (Romania), that other solutions have of those with deafblindness under the aegis of Deafblind been identified in other is the natural result of four International, the conference Central and Eastern European converging principles that will be an excellent countries. Having been part of guide the organization: opportunity for taking the the the European Deafblind vision, strategy, resources, first steps towards creating a Project, through the Lifelong promotion.” regional network promoting Learning Programme of Mr. Cristian Buica, University the rights of people with the European Commission, Lecturer at the University deafblindness. alongside 33 organisations of Bucharest, a long term from 25 countries, we know collaborator of SI Romania, Looking forward to hearing the existing services in Europe. holding training courses in from you all! We therefore make this the field of deafblindness for appeal to organisations and special education teachers Cristiana Salomie, Director, individuals in Albania, Belarus, who work with children with Sense International Bosnia-Herzegovina, Bulgaria, deafblindness. ( (Romania) (csalomie@ Estonia, Latvia, Lithuania, senseint.org.ro) Poland, Czech Republic,

January 2015 • DbI Review • 63 Country news

UK Researching the Voices of Deafblind Children: an update on research activities at the University of Birmingham1, UK

I am Liz Hodges. I trained We work in the Department as a teacher of deafblind of Disability and Inclusion. We children and have and have a very strong reputation have been working with in the field of special needs, deafblind people for nearly including specialists in 30 years. My more formal hearing impairment and research in deafblindness visual impairment and we are has focused on acquired committed to deafblindness. deafblindness but my interest Our department has been in children and congenital training specialist teachers of deafblindness remains. I work deafblind children for more at the University as a teacher than 25 years. trainer in deafblindness As researchers, we are social Liz Hodges for three days a week and scientists, looking at the ways as a specialist a teacher of in which people live their lives, deafblind children for two usually through asking them days a week. about themselves in relation to the research we are doing. I am Liz Ellis. I am a research The work we do is focused on fellow at the University of helping people to have their Birmingham and have been voices and opinions heard and so for nearly three years. I validated by research. In three first volunteered for a Sense recent projects we have found holiday sixteen years ago out how funding changes and have been working in have affected deafblind a voluntary and now paid people, about how they feel capacity in relation to about hospital visits, about deafblindness ever since. I the real, lived experience of have been involved in three Usher syndrome, and in all research projects about of this, what it is like to be deafblindness since coming to deafblind today. Liz Ellis the University. I am a British We focus on meeting people Sign Language (BSL)2 level 2 in their own homes and using signer. the communication methods they prefer, be it speech, writing, or sign language. We have a very strong reputation in The professional skills in our “ team and in our department the field of special needs, including allow us to be flexible and to understand what those needs specialists in hearing impairment are, e.g. to produce materials in BSL or in braille. and visual impairment and we are We are committed to listening to what people say, committed to deafblindness”

1 www.birmingham.ac.uk 2 www.britishsignlanguage.com 3 http://www.birmingham.ac.uk/research/activity/education/victar/research/research-with-people-with-deafblindness.aspx.

64 • DbI Review • January 2015 Country news

UK continued

what they feel and think, being depressed but many of practitioners working with about what is happening for developing their ability to deafblind people. Because of them, so that we can reflect adapt and then continue to the nature of deafblindness, these voices in our research. live their lives to the full and many of these projects, Our work is also founded in make choices for themselves. although fairly small scale, social science methodology, We are currently working represent original research on so that we look carefully on two projects specific to new topics. We also supervise at issues such as sampling, the UK, one looking at the PhD students working in analysis and validity meaning changes in disability related the field of deafblindness that our reports can be read benefits and how this is and have a student working and respected in academic affecting visually impaired with us at the moment on and government circles. and deafblind people in the CHARGE syndrome. Students There is an increasing call UK. The other is looking at undertaking teacher training for evidence based practice, how specialist hospital clinics in deafblindness benefit from that is, demonstrating the meet the needs of deafblind the input of our research and evidence for approaches, or people with the syndromes our researchers. schemes to provide continued Usher, CHARGE, Wolfram4, commitment to them and this Bardet-Biedl5, Stickler6 and Our work would not be is what our research supports. Alström7. We hope that the “ We are very proud of the outcomes of the first project possible without funding and outcomes of our research3. will help organisations to In the last ten years we have give better advice to people we are deeply grateful to completed three projects applying for these benefits in relation to people with and to understand what those who have enabled us to acquired deafblindness in campaigns may be needed older age, one of these about to ensure deafblind people take on these projects” people in care homes. These get what they are entitled looked at the needs and to. For the second project we Our work would not be expectations and the life are hoping to demonstrate possible without funding and stories of older people. models of good practice for we are deeply grateful to More recently we have hospitals when dealing with those who have enabled us to completed a two year study deafblindness people, in take on these projects: Sense, into the lives of people with relation to the environment, Royal National Institute for Usher Syndrome in the UK. communication and sensory the Blind8 (RNIB), the Thomas We believe this is among awareness. Pocklington Trust9, and Bupa (a the largest social studies In addition we support private healthcare and social of Usher syndrome and students researching in care organisation in the UK)10. the first to include people deafblindness. We have with Usher type 3. In telling a number of students For more information their own stories, we found completing Masters contact: Dr. Liz Hodges that people with Usher met degrees each year, ranging ([email protected]) this challenge with a wide from audits of services to or Dr Liz Ellis range of responses, some investigating the world view ([email protected])

4 ghr.nlm.nih.gov/condition/wolfram-syndrome 5 ghr.nlm.nih.gov/condition/bardet-biedl-syndrome 6 ghr.nlm.nih.gov/condition/stickler-syndrome 7 ghr.nlm.nih.gov/condition/alstrom-syndrome 8 www.rnib.org.uk/ 9 www.pocklington-trust.org.uk 10 twww.bupa.co.uk

January 2015 • DbI Review • 65 Network News

DbI Youth Network (DbIYN) Acquired Deafblindness Network Liz Duncan Email: [email protected] Simon Allison reports: CHARGE Network Andrea Wanka he Youth Network Tel: ++496251939797 Fax: +4916090309876 Tpublication ‘A Glimpse Email: [email protected] of Our World’ has now been Communication Network published. This is a collection Ton Visser on eighteen inspirational Email: [email protected] stories from deafblind young Employment Network people from around the world. Diana Bonilla Sinibaldi Each story highlights how Tel: +(502) 52089291 Fax: (502) 24347934 culture, heritage and service Email: [email protected] provision influence the lives European Deafblind Network of deafblind youth. There Ricard Lopez Manzano are some wonderful heart- Tel: +34-678-712-619 warming stories featured in Fax: +34-678-782-600 Email: [email protected] the book that provide a unique Website: www.edbn.org insight into how young people Photo of Lydia, Richard and Tamika from the overcome the many challenges Latin America Network drama group that performed in Belfast Sandra Polti they face. Stories feature from ARGENTINA countries including Romania, Email: [email protected] delegates. Malawi, USA, Scotland and Norway. The Youth Network coordinating Outdoor Network To order a copy please email the Joe Gibson group are busy planning an activity Tel: 4+4 (141) 429-0294 youth network coordinator simon. for Network members that will take Email: [email protected] [email protected]. place in 2015. The activity will also Rubella Network Members of the ‘GOT 2 Act’ include a half day of workshops Joff McGill; drama group were delighted to delivered by young people. Further Email: [email protected] participate in the recent ADBN announcements will be made soon Siblings Network conference in Belfast. ‘GOT 2 Act’ about booking arrangements for Sabine Kersten is a deafblind youth drama group Tel: +32 476 612 879 the activity. Email: [email protected] from England who are members of DbIYN. The group have written Social-Haptic Communication For more information contact Network and produced a play about the Simon Allison (simon.allison@ Dr. Riitta Lahtinen & Russ Palmer early life of Helen Keller. The group sense.org.uk). Tel: + 358 40 522 4201 have been practicing since June Email: [email protected]; and this was demonstrated in the [email protected] Watch for activity on our professionalism of the performance Tactile Communication Network new site on the DbI website: Bernadette Van den Tillaart in Belfast. The cast also experienced http://youthnetwork. Tel: +1-740-426-6728 some of the workshops on the deafblindinternational.org Fax: +1-740-426-6728 opening day of the conference Email: bernadettevandentillaart@ and made many friends with the tiscalimail.nl Usher Syndrome Network Emma Boswell Each story highlights how Email: [email protected] “ Youth Network Simon Allison culture, heritage and service Tel: 0044 7798 882 496 Email: [email protected] provision influence the lives of deafblind youth”

66 • DbI Review • January 2015 Network News

CHARGE Network

Andrea Wanka reports:

German CHARGE aids is essential. Due to the Conference rare occurrence of CHARGE syndrome, parents, teachers The 8th international and other professionals have German CHARGE conference limited knowledge about took place July 03 – 06, 2014 it. Therefore, networking in Oberwesel, Germany, and centralisation of hosted by the German services and knowledge CHARGE group. is of utmost importance. Prior to the main family The Nordic Network of conference, a professional CHARGE syndrome has been focused preconference operating since 2002. It featured such participants as is organized by the Nordic Nordic Network has already Dr. David Brown (USA), Prof. Centre for Welfare and Social stimulated local networking Dr. Tim Hartshorne (USA), issues (www.nordicwelfare. in Iceland and sharing of Gail Deuce (UK), Dr. Kim org) under the category of information and knowledge Blake (Canada) and at the deafblindness. Within the among professionals and main conference also Prof. Network each of the five parents of children with the Dr. Conny van Ravenswaij Nordic countries (Denmark, syndrome. (Netherlands). Finland, Iceland, Norway Prepared by Solveig Before the conference, a and Sweden) is represented Sigurdardottir (Email address: youth weekend was organized by one or two professionals [email protected]) and a film featuring youth who are active locally in and young adults with the deafblindness field. The CHARGE was produced. This Responsibility for purpose of the Network is was presented during the CHARGE Syndrome in to collect, share and spread conference by the youths Norway knowledge on the syndrome and young adults. See www. within the Nordic countries. In Norway the responsibility charge-syndrom.de. The Network focuses on for CHARGE syndrome is now the educational needs, located at the Frambu Center Nordic Network of psychological consequences For Rare Diseases (www. CHARGE syndrome and behavioural aspects frambu.no). See detailed Newborns with CHARGE of the syndrome. The article about Frambu in this syndrome frequently need national representatives edition. intensive care services and meet every year and share many of them undergo knowledge and experience For more information, please surgeries as infants. As around a certain theme – contact Andrea Wanka: soon as the children are in for instance tactile sense Andrea-Wanka@ a stable medical condition and communication, social dbicharge.org early intervention services aspects of the syndrome and should be initiated by a pain. Iceland was the last Watch for the new multidisciplinary team. country to join the Network. CHARGE Network subsite For those children with As the Icelandic population on the DbI website: deafblindness, coordination is small such cooperation http://chargenetwork. of the visual and auditory is very important. The deafblindinternational.org

January 2015 • DbI Review • 67 Network News

Social-Haptic Communication Network

Riitta Lahtinen and Russ Palmer report:

he Social-Haptic Network learners with diverse The second stage of the Thas been collaborating (special needs) and Social-Haptic Communication with different universities collection of case studies; Studies continued with the in Finland. The Intensive 2. Preparing a Scientific Royal Association for the Deaf Special Education (ISE) is Article outlining the use of (RAD)4 in the UK in June. a new research group at haptices for describing the There were 30 delegates the Department of Teacher environment, objects and representing professionals, Education in the University multimodal perception , interpreters, deafblind people of Helsinki1, which started and and family members. During on May 2014. The leader of 3. Outlining the pedagogic the day we discussed and the research group is Elina approach to social-haptic shared experiences on how Kontu (docent2) from the communication – which social-haptic communication University of Helsinki. The is the basis of teaching can be applied in everyday senior researcher is Riitta methodology for teachers life. Lahtinen (PhD), head of using social-haptic A new group of the Communication Unit communication. professionals (including from the Finnish Deafblind those who are sign language Association3, while Russ Recent publications communicators working with Palmer, (SRAT) acts as included: ‘Practice Oriented deafblind people) started consultant. The research Safety Procedures in Work studies in a 6 day credit group consists also of project Environment with Visually and course called ‘Social-Haptics manager Terhi Ojala (MA) and Hearing Impaired Colleagues’ for Different Client Groups researcher Irene Rämä (MA), by Lahtinen, R., Palmer, R. & Including the Elderly and both from the University of Ojala, S. and a lecture given Autistic People’. Helsinki. at the Safe and Secure Cities conference in Turku, Finland For further information The main research areas published in the Proceedings about the Social-Haptic related to social-haptic of the 5th International Communication Network, communication during 2014- Conference on Well-Being contact: 2015 included: in the Information Society riitta.lahtinen@kolumbus. 1. The use of haptices in (WIS2014, p.109-120). fi or [email protected]; teaching settings with www.russpalmer.com

1 www.helsinki.fi/university 2 en.wikipedia.org/wiki/Docent 3 www.kuurosokeat.fi is a small corporate member of DbI 4 www.royaldeaf.org.uk

68 • DbI Review • January 2015 Network News

Communication Network

Ton Visser reports:

t’s been some time since we Iinformed about the activities of our network. This doesn’t mean nothing has happened; on the contrary! We are happy to inform about our recent activities and plans for the future.

Masters of Communications Course In our last report we informed the membership that organizing and participating in the high Groningen University Masters Proposed Conference – Access standard Master on Communication Program Director, and a member to language of the Network, expects that 5 (Congenital deafblindness) A year ago we indicated that additional students will defend course at University of Groningen we would not be involved again their Masters in 2015. Nearly all of (Netherlands) continues to be one in organizing conferences. At our them are former Masters program of the main Network priorities. last Network meeting we decided students. In the last couple of years we to review that decision for several dedicated almost all of our reasons. First, we realized that most energy and time towards further Open access journal of the Masters students profited development of this Masters Course. The Open access journal project from the work done by our Network. We discuss and develop theoretical was much more complicated than Secondly, we are coming up to a frameworks and concepts year by we expected. To meet the criteria celebration of the 10th anniversary year. to realize the standards for such of the Masters Program. Thirdly, The next Masters Course, the magazine required a lot more work and maybe the most important 10th, will start in September 2015. and cooperation with different one, is the fact that there has been We are very happy that so many people than we realized. For the a lot of theoretical developments in people have graduated from editorial review of the articles we our field since our last conference this course. With all the research have to follow very strict rules. in 2010. Our initial thoughts are done by the Masters students, we Nevertheless, the articles for our to plan for a conference in March move more towards what we call first edition have been reviewed 2017. The title we are considering “Evidence Based Practice” for people are ready to go. Therefore, in is: Access to language. In this with congenital deafblindness, cooperation with the University of conference we want to discuss especially through using ‘single Groningen, our first edition will be the concepts used over the past case experimental designs’. available in the Spring of 2015. years and present new concepts At this moment we wish to In our next report we will give for discussion. The format used in celebrate the successful defense more details about the articles our earlier conferences will be the this past October by Marga Martens which can be published in this same: plenary sessions followed by of her PhD thesis titled “The journal. We are now planning for workshops to support the transfer Intervention Model for Affective the second edition to be published from theory to practice. Involvement and its Effectiveness”1. for Winter/Spring 2016. As we are Marga was one of the first students now more familiar with the proper Ton Visser (asmvisser1948@ who graduated from the Masters procedures, we expect to publish gmail.com), on behalf of the DbI program. Marleen Janssen, future editions much faster. Communication Network

1 An article pertaining to this PhD research, authored by Marga Martens and Marleen Janssen, appeared in DbI Review Edition 53 (July 2014).

January 2015 • DbI Review • 69 Network News

Outdoor Network

Joe Gibson reports:

n September 2014 we a better way forward. We also Ihad the latest outdoor discussed where the week week, this year in Denmark. might be next year, and if it Eleven deafblind people is possible to create a winter and their support staff had outdoor week. a great week in the North There are also some virtual of Denmark where, among developments. DbI have experiences happening all other things, we built a bridge recently given the networks through the year, ideas for over a stream on the beach, some dedicated webspace activities, and to publicise went fishing on the sea and on their website, watch for future events. This will be a climbed to the top of a huge the new Outdoor Network private page so people will sand-dune. All our dinners Subsite on the DbI website: be free to discuss and share. were self-made and one also http://outdoornetwork. All current members of the self caught, and cooked over deafblindinternational.org We network will receive an invite an open fire. There was lots hope to be adding content to to the group and if you are of time to meet the new this soon! not currently a member and participants and catch up with We also decided to set up wish to join please contact old friends. a Facebook group. This will One evening around the fire be a place where members of Joe Gibson (jgibson@ we discussed the direction of the network can share stories sensescotland.org.uk) or the network. Each year the of the amazing outdoor Kari Schjøll Brede outdoor weeks have become ([email protected]) larger and we talked about the pros and cons of this. We The outdoor group in Denmark would like to include more people, but if we grow too big, it will be more difficult to administer and might not suite the participants. Perhaps several smaller events will be

Constructing a bridge

Exploring a cod

70 • DbI Review • January 2015 Network News

Siblings Network

Sabine Kersten reports:

medical and legal issues, and longer can. Anyone government benefits if you’re interested in the already caring for your sibling. welfare of people The book focuses on the with disabilities top issues identified by ought to be siblings. It offers practical interested in us.” draw your attention to information and anecdotes Therefore I do Ia new book recently about: statistics and research hope you all will produced titled: ‘The Sibling about siblings; younger read this book, Survival Guide: Indispensable siblings’ feelings; impact on and use it to get Information for Brothers your life decisions; caring for to know about and Sisters of Adults with multiple generations; aging us, our concerns, Disabilities’, written and and disability; taking care hopes and edited by Don Meyer and of yourself; getting services dreams for the Emily Holl. and advocacy, and future future. If you’re a teenaged or planning. Copies can adult brother or sister of This book will be very be purchased someone with a disability, useful not only for siblings online from Amazon.com. then this book is for you. It themselves, but also for offers a sense that you’re parents, counselors, and For more information not alone. It includes tips on disability service agencies. about the Siblings Network, how to talk to your parents As one sister wrote, “We contact Sabine Kersten about plans for your sibling, a will become caregivers for our ([email protected]) crash course in guardianship, sibling when our parents no

A Glimpse of Our World

A collection of inspirational stories by young deafblind people published by the Deafblind International Youth Network

Young deafblind people live their around the world have succeeded lives in many different ways. in overcoming the many Their choices and decisions challenges they have faced. are influenced by many things All the money raised from including where they live, their the sale of the publication will culture and heritage. contribute to future activities Being deafblind in a seeing, for members of Deafblind hearing world creates challenges. International Youth Network. Are these dealt with in different ways in different countries? For copies of this book, contact The collection of stories Simon Allison (Deafblind provides a unique insight into International Youth Network), how deafblind young people from [email protected]

January 2015 • DbI Review • 71 Grundtvig project

Mapping opportunities for Deafblind people across Europe

Lucy Drescher describes the work of the Grundtvig project which has been collecting data about the position of deafblind people across Europe.

have been working together to setting and the questionnaire on share good practice; develop ways a set of disability indicators (an to set standards and produce a indicator is a thing that indicates questionnaire – the answers to the state or level of something – for which formed the basis of the final example, the number of children report. The group included Royal who complete secondary education Dutch Kentalis1, Sense UK2, Sense indicates how developed a country Scotland3, Centre for Deafblindness is) that were developed by a group and Hearing Loss (CDH)4, Catalan of academics called ANED for the Association for Persons with European Union. Deafblindness (APSOCECAT)5, The indicators cover all different Austrian Relief Organisation for parts of peoples’ lives, such as People who are Deafblind (OHTB)6, personal and family life, education e are now starting to get a France National Resource Centre and employment. They also include Wclearer picture of the lives for Rare Disabilities–Deafblindness things such as whether deafblind 7 of the estimated three million (CRESAM) , Hungarian Deafblind children have access to mainstream deafblind people across Europe, as Association (SVOE), Slovakian primary education and/or the result of a project funded by the Association of Parents and Friends specialist support and whether European Union. of Deafblind Children (ZRaPHSD) deafblind people are entitled to 8 For the past two years ten and Sense International Romania . communication support when they organisations from across Europe The group based their standard go to see the doctor. These indicators were used to compile a questionnaire which we could use to ask each of the countries in Europe about the situation of deafblind people in their country. We sent out the questionnaire and received 27 replies from 25 countries. The final report sets out the findings of the questionnaire and makes recommendations for the European Union, national governments, local governments and organisations working with deafblind people.

Group picture Netherlands

1 www.kentalis.nl. Kentalis is a large corporate member of DbI. 2 www.sense.org.uk. Sense is a large corporate member of DbI. 3 www.sensescotland.org.uk. Sense Scotland is a large corporate member of DbI. 4 www.dbc.rn.dk. CDH is a small corporate member of DbI. 5 www.apsocecat.org 6 www.oehtb.at. OHTB is a small corporate member of DbI. 7 www.cresam.org 8 www.surdocecitate.ro. Sense International Romania is part of Sense International which is a small corporate member of DbI.

72 • DbI Review • January 2015 Grundtvig project

What did we find out? There is little A very clear issue that came out of consistency in the findings is that there continues the mechanisms to be a lack of recognition of for organisations deafblindness as a specific disability representing – and this has a detrimental effect deafblind people to on the lives of deafblind people in feed into disability European countries. Here are some consultation of the key findings: processes.

Data Access to goods There is not enough information and services being collected on the numbers of There is a lack of European level by Eurostat and deafblind people, their ages and comprehensively accessible services, others. whether they are male or female. with both physical and sensory Only three out of 27 states collect accessibility. There is limited l At a national level the key official data (i.e. census data) on access to public transport in many recommendation is that the number of deafblind people places. Access to special aids and governments recognise in their population. In addition, equipment is patchy and there is a deafblindness as a specific organisations working with lack of medical services specific to disability and then agree on deafblind people are not collecting the needs of deafblind people. standardised census questions, enough data on the people they to enable governments to are working with. Without this Education collect data on the numbers of people with hearing and information it is hard for decision There are generally limited sight impairments. There is makers to know what funding educational options for children. they need to provide services for also a recommendation on the need for a specific budget for deafblind people in their area/ Employment country. communication support, which There was generally a lack of should be seen as an essential information about employment. service. Home and family life Very little information about the There are disparities in employment situations of deafblind The project funding has now opportunities to participate in people exists in most states – either come to an end but the group social and private life which impacts because there are no requirements is continuing to stay in contact on deafblind peoples’ capacity to record this information or and to take the issues raised in to sustain family relationships. because very few deafblind people the report to decision makers There are also inadequate are employed. In addition, support wherever possible. In particular, accommodation options. Only in the workplace is lacking or recommendations are being taken just over a third of states provide difficult to access. to Members of the European deafblind people with the legal Parliament and officials working in right to support for living in a place Recommendations the European Commission. of their choice. In response to these findings, the report makes a number of If you would like a copy of the Choice and control recommendations at a European report or more information Restricted access to support in order and national government level. This about the project go to to vote: While the majority of states includes: the project website www. have at least one form of support l Establishing a common deafblindindicators.eu or email available to enable deafblind framework across Europe for the [email protected]. people to exercise their right to collection of standardised data at vote, access to this support is often a national level – in order to be Lucy Drescher, Sense International patchy and only obtained at the able to compare differences and Policy and Support Officer request of the deafblind person or developments and the publication Email: [email protected] their family. of data on deafblindness at a

January 2015 • DbI Review • 73 Frambu Resource Center

Frambu Resource Center for Rare Disorders

rambu1, a private foundation their own boundaries and to Ffunded by the Norwegian discover new possibilities in government, provides specialized themselves. services for people with rare disorders through a National Research and development Resource Centre. Research and development is Frambu’s vision is to provide another of Frambu’s activities. The leading-edge expertise, knowledge work involves surveying, collating and services in the field of rare and organizing the knowledge base disorders for individuals through around rare disorders, gleaning their entire life cycle from childhood material both from practical Children, including siblings, attend to old age. experience and from Frambu’s day care and school on site at The objectives of Frambu are to day-to-day operations. The aims Frambu, and are supported by collate, develop and communicate of our developmental work at play therapists. Courses offered at knowledge about rare disorders and Frambu are threefold: to deepen Frambu are free of charge for the disabilities on behalf of individuals, our knowledge both of the specific families. both with and without a rare disorders we work with and of ways disorder, their close/immediate of coping with a rare disorder and family and the professionals who We meet the users in their to contribute to the development work with them, so that children, own environment of high-level expertise in the field of adolescents and adults with Frambu professionals visit users, rare disabilities. To this end, Frambu impaired abilities can live a life their families and the professionals collaborates with educational in harmony with their condition, who work with them in their own institutions and centers of expertise aspirations and needs. communities. Collaboration with in Norway and abroad. The National Centre organizes local health services and staff its services into the following core ensures that people with a rare Information areas: specialised tailored courses, disorder and their families receive summer Camps for children and People with a rare disorder, their treatment, care and services adolescents, outreach information immediate family and professionals appropriate to their needs within and counselling services on a local may contact Frambu by e-mail or their local community. This service and national level and research telephone for accessible, relevant is also provided free of charge. and development. These services and professionally reviewed are supplementary to the regular information about the rare disorders treatment and care to which every Popular summer camps for which Frambu caters. Frambu citizen is entitled. Each summer Frambu arranges also produces information materials Frambu caters to more than 120 four camps for groups of 40 to about individual disorders, groups different rare disorders. 50 children and adolescents with of disorders and topics relevant to rare disabilities, without their many disorders. These resources Specialized Courses accompanying parents. These may be ordered at our website or extremely popular camps last by direct request to Frambu. The Courses at Frambu are organized for one to two weeks and enable staff of the library at Frambu can according to specific disorders, youngsters to meet others in the also provide guidance on relevant groups of disorders or topics that same situation as themselves, literature and helpful websites. may be relevant to many disorders. to share experiences and to Frambu’s information materials While attending a course, people build a network of friends and are free of charge for people with stay at Frambu and come together acquaintances. Frambu strives to a diagnosed disorder and their for lectures, group discussions, enable participants to challenge immediate family. consultations and joint activities.

1 http://www.frambu.no. Frambu is located in Ostmarka, 17 south of Oslo.

74 • DbI Review • January 2015 Frambu Resource Center

One family’s experiences with and the special educational services a meeting for families and friends of Frambu have attended courses at Frambu. families who had a child with SMS. And a special educator, a nurse, and This meeting was intended to be The following is a father’s a social worker from Frambu have informal allowing attendees to ask testimony about their experience visited the municipality on different questions and obtain information with Frambu. Their youngest occasions and given counseling and about SMS and the challenges as son, who now is 6 years old, was information about SMS and our parents we live with. The parents of diagnosed with Smith-Magenis son’s challenges, needs and positive children with SMS were not present, Syndrome (SMS)2 as a toddler. They traits. making it easier to ask questions have to other sons too. In general, we perceive they normally wouldn’t ask us or Frambu’s services to be of a high ask if we were present. Initiatives “Frambu is a very important interdisciplinary standard, and they like this shows that Frambu resource we as a family and our have a good connection with their understands and acts according to support staff have had good use user groups, which give them a solid the families situation. of. We, as a family, have attended practical foundation. They recognize We could, of course, wish that two family courses. One was real challenges and the problems Frambu had more resources and directed toward families with a rare those create in our daily life. capacity, especially regarding chromosome disorder in general, Frambu has also several times given supportive services in the local the other towards Smith-Magenis us written statements to attach to community and research. The syndrome. Our oldest son has also applications for resources or other different diagnoses groups are attended a sibling camp, and the aids we need. Our case workers have very small and it is hard to create grandparents have attended two also had the opportunity to contact an understanding about the courses for grandparents. Frambu directly if they have any different phenotypical problems Our family has also received questions or concerns. in the schools and municipalities guidance through participating in The courses we have attended in general. More knowledge is a project about SMS and behavior, have given us much relevant needed both for parents to meet where our son with SMS has been knowledge and a network of people our responsibilities and for the one of the subjects. The fact that in similar situations as us. We also professionals who are supposed to our son has been followed so believe that through our contact, support us as a family.” closely, has given Frambu an insight Frambu has increased their ability into him and our family that has to give advice and help to others. For more information, contact been an important resource in the We always receive a high level of Wencke E.Grepperud (Wencke. dialog with our support staff, a service and professionalism with [email protected]) dialog that often is demanding. sincere commitment from Frambu. Both staff from the kindergarten One example is when they arranged

2 en.wikipedia.org/wiki/Smith–Magenis_syndrome

January 2015 • DbI Review • 75 Marie’s Story

Marie’s Story:

A new film about a congenitally deafblind girl considered France’s Helen Keller

arie’s story1 is based graphically described Mon real life events that the method pursued by took place in France in the Sister Marguerite for late 19th century. Born deaf the education of Marie and blind, Marie Heurtin, Heurtin, deafmute and aged 14, is incapable of blind by birth. communicating. Despite Marie Heurtin, often the advice of a doctor who seen as the French believes she is “dumb”, Hellen Keller, arrived at Marie’s father, a humble Larnay in March 1895 at artisan, cannot bring himself the age of 10. She was to commit her to an asylum. in an even worse state Out of despair, he goes to than the American girl: Larnay Institute2 near Poitiers, struggling and howling where nuns take care of like a wild child, carried young deaf women. by her arms and feet, Despite the Mother it was impossible to Superior’s scepticism, Sister predict if she could Marguerite, a young nun, learn anything and how, since takes this “wild little animal” she had neither sight, hearing communicate by touch and under her wing and does nor power of speech. who were eager to feel my everything she can to bring hands and face as soon as I her out of her darkness. She Comments by Director arrived. I felt quite powerless will succeed, in spite of some Jean-Pierre Améris trying to communicate with failures and the temptation of This project began with my them. discouragement, armed with fascination for the story of her joyous faith and love for Helen Keller. In my research, I I also met these children’s young Marie. came across the lesser known parents who explained the story of Marie Heurtin and challenges they faced. Historical facts I immediately decided to Exactly like Marie Heurtin’s In the second half of the visit the Larnay Institute in father over a century ago, 19th century, The Larnay Poitiers, where she lived in the some were told by doctors Institute, a convent near 19th century. that their child was mentally Poitiers directed by the The Insitute is no longer a challenged and would never “Sisters of Wisdom”, brought religious establishment, yet be able to communicate. together a group of deaf- remains a center for deafblind The parents despair ended blind children to give them an children. In light of the when they were introduced to education and teach them to scientific progress of the last the instructors of the Larnay communicate through sign hundred years, I was surprised Institute who taught their language. to find that the institute was children how to make contact Larnay gained worldwide still in operation. with the world. renown after the publication It is difficult for me to of Louis Arnould’s “A Soul describe how I felt when I met Jacques Souriau (Jacques. in Prison” in which he these children who could only [email protected])

1 Written by Jean-Pierre Améris and Philippe Blasband 2 https://inventaire.poitou-charentes.fr/.../ Poitiers ... / ... biard

76 • DbI Review • January 2015 Tactile street name signs

Tactile street name signs1

ne way in which people The City of Sydney Council close range. As Braille is an Owho are deafblind can has decided to up-grade the international form of reading, find their way around the City tactile signs and is currently visitors are able to find their of Sydney, Australia, is by the testing a new material, way around the City of network of tactile street name lightweight aluminium with a Sydney. signs. photopolymer membrane. The sign in the photograph The signs were originally The signs carry the street reads “Margaret St 42 – 60 L”. developed in 1991 by name and property numbers This indicates that the reader Sydney City Council with the in raised lettering and in is facing the curb in Margaret assistance of the Association Braille, with white text on a Street while standing in front of Blind Citizens New South black background. They are of property number 42, and Wales2, to help people with always found on the right- that property number 60 is vision impairment find their hand side of a traffic light to the L (left). At the other way around the City. pole as the reader faces the end of this city block the sign Rubber was selected as the curb, adjacent to the audio- reads, “Margaret St 60 – 42 base material at the time in tactile pedestrian button and R”, to indicate that the reader preference to metal or plastic, approximately one metre is standing in front of property as metal can become very above the pavement. number 60 and that property hot in the middle of summer, This location allows easy number 42 is to R (right). and some plastics do not access to the signs for Although the signs provide sufficient tactility, or people who touch-read, and were originally developed they reflect light so that the for people with low vision for people with vision message becomes blurred. who can read the sign at impairment, it has been discovered that they also provide independence and dignity for people who have speech and hearing impairments, as they may not be able to ask for directions or hear the answer. At a time when there is growing interest in Universal Design3 it is hoped that other Cities might adopt a network of tactile street name signs similar to Sydney.

For more information contact: John Evernden, Accessible Public Domain (www.accessiblepublic domain.com.au) Email: [email protected]

1 Part of presentation made at 9th National Deafblind Conference, Sydney, Australia, June 2014 2 www.asnblind-nsw.org.au 3 en.wikipedia.org/wiki/Universal_design. Universal design (often inclusive design) refers to broad-spectrum ideas meant to produce buildings, products and environments that are inherently accessible to older people, people without disabilities, and people with disabilities.

January 2015 • DbI Review • 77 DbI News and Membership

Secretariat News

Meetings Conferences In November 2014, the DbI ADBN Conference Board and Management Immediately following Committee came together in the DbI meetings, Belfast, Northern Ireland to several Board and participate in the last meeting ManCom members of the year. A major area stayed on to attend of focus was reviewing the the 10th Conference progress DbI has made on the of the DbI Acquired current Strategic Plan. With Deafblindness the wealth of knowledge and Network (ADBN). The experience in the group we Secretariat manned Matthew Wittorff and Bronte Pyett were able to gather valuable the DbI display table feedback on areas we can to promote DbI to the Management Committee and improve on in the future. delegates. Annual General meetings will It was also a wonderful be held immediately prior opportunity to acknowledge DbI World Conference 2015 to the World Conference the achievements so far. The Registrations are open for the where the election of Officers AGM also took place and we DbI World Conference 2015. and Board members will be were delighted to welcome We encourage you to visit the decided. Lord Colin Low, President of conference website regularly ICEVI to the AGM to report for up to date information DbI Board, Awards on the activities of ICEVI. http://www.dbi2015romania. Belfast, Northern The Young Professional com. The DbI Board, Ireland, Leadership Award is a new November 2014

78 • DbI Review • January 2015 DbI News and Membership

DbI Award and we are excited to be calling for nominations as well as nomination for the DbI Distinguished Service Award and the DbI Lifetime Achievement Award. If you would like to nominate a deserving person, visit www. deafblindinternational.org/ awards.html and complete the Awards Nomination Form. Gill Morbey and All nominations must be Lord Colin Low received by March 13, 2015. membership.html on around the world and we On the back cover of each can help you reach a wider Membership DbI Review the current audience by posting news on DbI recognises that the Corporate members are the DbI website. If you have success it achieves worldwide listed. If you know of an an event or activity coming greatly depends upon the organization who should be a up, please keep us informed so support of its individual member of DbI we would be we can help spread the word. and corporate members to happy to send them a letter of We are happy to facilitate promote awareness and invitation. Please pass on any communication amongst DbI services. Thank you to all our suggestions to: secretariat@ members and our contacts members for your support this deafblindinternational.org. across the world so please year. Early in the New Year keep in touch with us and let we will be inviting members We love to hear from us know if we can help. to renew their membership you! to DbI. You can also visit Matthew Wittorff and Sharing information is at the the DbI website any time Bronte Pyett core of what we do. There is to join online at http:// DbI Secretariat so much great work going deafblindinternational.org/ Proudly hosted by Senses Australia

Board meeting in Belfast. November 2014

January 2015 • DbI Review • 79 Membership

DbI Board Membership 2011-2015 Management Committee The Management Committee for the 2011-2015 period includes the two elected offices (President and two Vice-Presidents), Immediate Past President, Treasurer, Information Officer, Secretary and Development Officer:

Gillian Morbey Bernadette Kappen Carolyn Monaco President Vice-President Vice-President Sense UK The New York Institute for Special Canadian Deafblind Association ([email protected]) Education, USA CANADA ([email protected]) ([email protected])

William Green Frank Kat Stan Munroe Immediate Past President Treasurer Information Officer AUSTRIA Royal Dutch Kentalis Canadian Deafblind Association ([email protected]) NETHERLANDS CANADA ([email protected]) (information@ deafblindinternational.org)

Knut Johansen Matthew Wittorff Development Officer Secretary Signo Døvblindesenter Senses Australia NORWAY AUSTRALIA ([email protected]) (dbisecretary@deafblind international.org)

Board Observers Lord Colin Low Contact: [email protected] DbI’s partner organizations, Website: www.icevi.org ICEVI and WFDB have observer status on the DbI Board: World Federation of the Deafblind International Council for Geir Jensen Education of People with Visual Contact: [email protected] Impairment Website: www.wfdb.org

80 • DbI Review • January 2015 Membership

Representing Large Corporate Members

Gillian Morbey Michael Karlsson Sian Tesni Sense UK Resurscenter Mo Gard CBM (Christoffel (Gillian.Morbey@ SWEDEN Blindenmission) sense.org.uk) (michael.karlsson@ UK mogard.se) (sian.tesni@cbm. org.uk) Andy Kerr Sense Scotland UK Cathy Proll Frank Kat (akerr@sense Canadian Deafblind Royal Dutch Kentalis scotland.org.uk) Association NETHERLANDS Ontario Chapter ([email protected]) CANADA (cproll@cdba Kaye Collard ontario.com) Able Australia AUSTRALIA Pilar Gomez Jutta Wiese (info@ableaustralia. ONCE German Deafblind org.au ) SPAIN Consortium ([email protected]) GERMANY Pierre J. Honore (jutta.wiese@ Interfond blindeninstitut.de) no photo DENMARK available (pjh.interfond@ mail.dk) Rossano Bartoli Roxanna Lega del Filo d’Oro Spruyt-Rocks ITALY DeafBlind Ontario (info@legadelfilo Services CANADA doro.it ) (execdir@deafblind ontario.com)

Representing DbI Networks

Andrea Wanka Liz Duncan Sabine Kersten CHARGE Network Acquired Siblings Network Stiftung Deafblindness BELGIUM St. Franziskus, Network (siblingsnetwork@ Heiligenbronn UK gmx.net) GERMANY (Liz.Duncan@ (andrea-wanka@ sense.org.uk) dbicharge.org)

Diana Bonilla Ricard Lopez Emma Boswell Employment Network European Usher Network GUATEMALA Deafblind Network UK (comunicacion@ SPAIN (Emma.Boswell@ fundal.org.gt) ([email protected]) sense.org.uk)

January 2015 • DbI Review • 81 Membership

Representing Small Corporate Members

Carolyn Monaco Dominique Spriet Marianne Disch Canadian Deafblind Réseau Français pour The National Centre Association la Surdicécité “RFPSC” of Knowledge on Disability and Social CANADA (French network for Psychiatry (ViHS) (carolyn.monaco@ Deafblind) sympatico.ca) DENMARK FRANCE (mdi@service (spriet.dominique@ styrelsen.dk) wanadoo.fr)

Graciela Ferioli Jackie Brennan Ricard Lopez Perkins International Overbrook School for Spanish Federation – Latin America the Blind of Deafblindness Office USA (FESOCE) SPAIN ARGENTINA ([email protected]) (rlopez@ (hperkins@ sordoceguera.com; fibertel.com.ar) [email protected])

Elvira Edwards Knut Johansen Ursula Heinemann Senses Australia Signo Österreiches Hilfswerk AUSTRALIA Døvblindesenter für Taubblinde (elvira.edwards@ NORWAY AUSTRIA senses.org.au) (knut.johansen@ (c.heinemann@ signo.no) zentrale.oehtb.at)

Henriette Koh Poh Kwang Bernadette Kappen Hermann Olesen Lighthouse School The New York Center For SINGAPORE Institute for Special Deafblindness and (kohpohkwang@ Education USA Hearing Loss lighthouse.edu.sg) (bkappen@nyise. DENMARK org) (Henriette.hermann. [email protected]) Ove Vedel Andersen Nordic Centre for Welfare and Social Issues (Ove.vedel@ nordicwelfare.org)

82 • DbI Review • January 2015 Another busy year!

With support from deafblind people and colleagues around the world, Sense and Sense International continued to promote opportunities and rights for people with deafblindness in 2014. You can read more about what this work has achieved in our Reviews of 2013/14: The Sense Review can be read at: www.sense.org.uk/review14 The Sense International Review can be read at: www.senseinternational.org.uk/sireview14 With best wishes to all our friends and colleagues for another exciting year in 2015 The World Association Small Corporate Members ARGENTINA Lars Søbye Website: www.lighthouse.edu.sg Promoting Services for Perkins Internacional América Latina Tel: +45 99 31 87 00 SPAIN Graciela Ferioli Email: [email protected] Spanish Federation of Deafblindness Deafblind People Tel: +54 351 4234741 Website: www.dbc.rn.dk (FESOCE) Fax: +54 351 4234741 FINLAND Ricard Lopez i Manzano Email: [email protected] The Finnish Deafblind Association Tel: +34 93 331 7366 AUSTRALIA Heikki Majava Fax: +34 93 331 4220 Honorary Officers Senses Australia Tel: +358 40 529 3439 Email: [email protected] Elvira Edwards +358 40 604 7477 Website: www.fescoe.org President Vice-President Secretary Tel: +61 - 8 - 9473 5400 Email: [email protected] APASCIDE - Spanish Association of Gillian Morbey Carolyn Monaco Matthew Wittorff Fax: +61 - 8 - 9473 5499 Website: www.kuurosokeat.fi Parents of Deafblind People Sense Canadian Deafblind Association Senses Australia Email: [email protected] FRANCE Dolores Romero Chacon Email: Gillian.Morbey@sense. Email: carolyn.monaco@ Email: dbisecretary@ Website: www.senses.org.au Réseau Français pour la Surdicécité Tel: +34-91-733 5208 org.uk sympatico.ca deafblindinternational.org Australian Deafblind Council (ADBC) “RFPSC” (French network for Fax: +34-91-733 4017 Carla Anderson Deafblind) Email: [email protected] Vice-President Immediate Past President Information Officer Website: www.apascide.org Bernadette Kappen William Green Stan Munroe Tel: +61 3 9882 8596 Dominique Spriet The New York Institute for Email: [email protected] Canadian Deafblind Association Fax: +61 3 9882 9210 Tel: +33 - 1 - 4627 4810 SWEDEN Special Education Email: information@ Email: carla.anderson@ableaustralia. Fax: +33 - 1- 4627 5931 The Swedish Resource Centre for Email: [email protected] Treasurer deafblindinternational.org org.au Email: [email protected] Matters Regarding Deafblindness Frank Kat Website: www.deafblind.org.au GREECE Michael Karlsson Royal Dutch Kentalis Development Officer The Royal Institute for Deaf and Hellenic Association of Deafblind Tel: +8 753 5940 Email: [email protected] Knut Johansen Blind Children “The Heliotrope” Fax: +8 755 2368 Signo Døvblindesenter Annette Clarke Diamanto-Toula Matsa Email: [email protected] Email: [email protected] Tel: +61 - 2 - 9872 0366 Tel: 30-210-6440689 Website: www.nkcdb.se Email: [email protected] Fax: 30-210-6440689 Nordic Centre for Welfare and Website: www.ridbc.org.au Email: [email protected] Social Issues Large Corporate Members The Forsight Foundation for the ICELAND Maria Creutz Deaf/Blind National Institute for the Blind, Tel: +45 - 96 - 47 16 00 AUSTRALIA GERMANY THE NETHERLANDS Trish Wetton Visually Impaired and the Fax: +45 - 96 47 16 16 Able Australia German Deafblind Consortium Royal Dutch Kentalis Tel: +612 9872 9000 Deafblind Email: [email protected] Kaye Collard Jutta Wiese Frank Kat Fax: 6+1 (029) 872-9111 Estella D. Björnsdóttir Website: www.nordicwelfare.org Tel: +61 - 3 - 9882 7055 Tel: +49 - 511 – 5100 815 Tel: +31 73 55 88 280 Email: [email protected] Tel: 0+0 (354) 545-5800 SWITZERLAND Fax: +61 - 3 - 9882 9210 Fax: +49 - 511 - 5100 857 Email: [email protected] AUSTRIA Fax: 0+0 (345) 568-8475 SZB Beratungsstellen für Email: info@ableaustralia. Email: jutta.wiese@ Website: www.kentalis.nl Österreiches Hilfswerk für Taubblinde Email: [email protected] hörsehbehinderte und taubblinde org.au blindeninstitut.de Christa Heinemann INDIA Menschen Website: www.ableaustralia. UNITED KINGDOM Mäde Müller CBM – Christoffel Sense Tel: +43 - 1 - 6020 81213 Sense International (India) org.au Blindenmission Fax: +43 - 1 - 6020 81217 Akhil Paul Tel: +41 (0)44 444 10 81 Gillian Morbey Fax: +41 (0)44 444 10 88 CANADA Sian Tesni Tel: +44 20 7520 0999 Email: [email protected] Tel: +91-79-26301282 Email: [email protected] Website: www.oehtb.at Fax: +91-79-2630 1590 Email: [email protected] DeafBlind Ontario Fax: +44 845 127 0062 Website: www.szb.ch Services Website: www.cbm.org Email: Gillian.Morbey@sense. BRAZIL Email: [email protected] Website: www.senseintindia.org Tanne, Schweizerische Stiftung für Roxanna Spruyt-Rocks ITALY org.uk Grupo Brasil de Apoio ao Surdocego Tel: +1 - 905 - 853 - 2862 Website: www.sense.org.uk e ao Múltiplo Deficiente Sensorial IRELAND Taubblinde Lega del Filo d’Oro Mirko Baur Fax: +1 - 905 - 853 - 3407 Rosanno Bartoli Sense Scotland Shirley Rodriguez Maia The Anne Sullivan Centre Email: execdir@ Tel: +55 - 11 - 5579 5438 Liam O’Halloran Tel: +41 - 44 - 714 7100 Tel: +39 - 071 - 724 51 Andy Kerr Fax: +41 - 44 - 714 7110 deafblindontario.com Fax: +39 - 071 - 717 102 Tel: +44 (0)141 429 0294 Fax: +55 - 11 - 5579 0032 Tel: +353 - 1 - 289 8339 Website: www. Email: [email protected] Fax: +353 - 1 - 289 8408 Email: [email protected] Email: [email protected] Fax: +44 (0)141 429 0295 Website: www.tanne.ch deafblindontario.com Website: www.legadelfilodoro.it Email: akerr@sensescotland. Website: www.grupobrasil.org.br Email: lohalloran@annesullivancentre. Canadian Deafblind org.uk CANADA ie THE NETHERLANDS Association Ontario SPAIN Website: www.sensescotland. CDBA National Website: www.annesullivan.ie Bartimeus Chapter ONCE Unidad Técnica de org.uk Tom McFadden Deafblind Ireland Betty van Wouw Cathy Proll Sordoceguera Tel: +1-866-229-5832 Kathleen Deasey Tel: +31 - 343 - 526 650 Tel: + 1-519-442-0463 Pilar Gomez USA Fax: +1(905) 319-2027 Tel: +35 38 6020 1275 Fax: +31 - 343 - 526 798 Fax: + 1-519-442-1871 Tel: +34 - 91 - 353 5637 Perkins School for the Blind Email: [email protected] Email: [email protected] Email: [email protected] Email: cproll@cdbaontario. Fax: +34 - 91 - 350 7972 Tel: +1 - 617 - 972 7502 Website: www.cdbanational.com Website: www.deafblindireland.org Website: www.bartimeus.nl Email: [email protected] Fax: +1 - 617 - 972 7354 com Resource Centre for Manitobans who ISRAEL Stichting Kalorama Website: www.cdbaontario. Website: www.once.es Email: [email protected] Marieke Verseveldt Website: www.perkins.org are Deaf-Blind (RCMDB) Nalaga’at Center com SWEDEN Bonnie Heath Adina Tal Tel: +31 24 684 77 77 Resurscenter Mo gård Tel: 1-204-284-6062 Tel: +972 (0)3 633 08 08 Fax: +31 24 684 77 88 DENMARK Email: [email protected]; Interfond Michael Karlsson TTY: 1-204-477-1390 Fax: +972 (0)3 682 37 15 Tel: +46 8 753 59 40 Fax: 1-204-284-2531 Email: [email protected] [email protected] Pierre J. Honoré Website: www.kalorama.nl Tel: +4563710218 Fax: +46 8 755 23 68 Email: [email protected] Website: www.nalagaat.org.il Email: pjh.interfond@ Email: michael.karlsson@ Website: www.rcmdb.mb.ca NEW ZEALAND Koninklijke Visio mail.dk mogard.se Rotary (Don Valley) Cheshire Homes Peter Verstraten Website: www.mogard.se Royal New Zealand Foundation for Tel: +3188 58 55 332 Inc. the Blind (RNZFB) Cindy Accardi Email: [email protected] Veta Endemann Website: www.visio.org Tel: +1 - 416 - 730 - 9501 Tel: 0064-09-3556900 Networks Fax: +1 - 416 - 730 - 1350 Fax: 0064-09-3556880 University of Groningen Email: caccardi@rotarycheshirehomes. Email: [email protected] Marleen Janssen Acquired Deafblindness EDbN Social-Haptic org Website: www.rnzfb.org.nz Tel: +3150-3636575 Website: www.rotarycheshirehomes.org Email: [email protected] Network Ricard Lopez Manzano Communication Network NORWAY Liz Duncan Tel: +34-678-712-619 Dr. Riitta Lahtinen & Russ The Lions McInnes House - Group Signo kompetansesenter UNITED KINGDOM Email: Liz.Duncan@sense. Fax: +34-678-782-600 Palmer Home for Deafblind Persons Anne Lise Høydahl Sense International org.uk Email: [email protected] Tel: + 358 40 522 4201 Joan Brintnell Tel: +4733438600 James Thornberry Website: www.adbn. Website: www.edbn.org Email: riitta.lahtinen@kolumbus. Tel: +1 - 519 - 752 - 6450 Email: [email protected] Tel: +44(0)20 7520 0980 deafblindinternational.org fi; [email protected] Fax: +1 - 519 - 752 - 9049 Fax: +44(0) 20 7520 0985 Latin America Network Email: [email protected] Signo Døvblindesenter Email: james.thornberry@ Charge Network Sandra Polti Tactile Communication Knut Johansen CHINA HONG KONG senseinternational.org.uk Andrea Wanka ARGENTINA Working Group Tel: +47-33-438 700 Website: www.senseinternational.org Tel: ++496251939797 Email: [email protected] Bernadette Van den Tillaart Resource Centre for the Deafblind Email: [email protected] Fax: +4916090309876 Tel: +1-740-426-6728 The Hong Kong Society for the Blind Website: www.signodovblindesenter.no Scene Enterprises CIC Outdoor Network Doreen Mui David Sutton Email: andrea-wanka@ Fax: +1-740-426-6728 Eikholt dbicharge.org Joe Gibson Email: Tel: +3723 8338 Tel: +44 191 492 8236 Tel: 4+4 (141) 429-0294 Fax: +2788 0040 Roar Meland Email: david.sutton@sceneenterprises. bernadettevandentillaart@ Tel: +47 3288 9050 Communication Email: jgibson@sensescotland. tiscalimail.nl Email: [email protected] org.uk Network org Website: www.hksb.org.hk Fax: +47 3288 9052 Website: www.sceneenterprises.org.uk Ton Visser Usher Study Network Email: [email protected] Research Network CROATIA Website: www.eikholt.no UNITED STATES OF AMERICA Email: asmvisser1948@ Emma Boswell Mali dom – Zagreb The New York Institute for Special gmail.com Walter Wittich Email: Emma.Boswell@sense. Statped Email: [email protected] Darija Udovicic Mahmuljin Education org.uk Bitten Haavik Ikdahl Bernadette Kappen Employment Network Tel: +385137746532 Tel: +4795994812 Diana Bonilla Sinibaldi Rubella Network Youth Network (DbIYN) Email: [email protected] Tel: (718) 519 – 7000 Joff McGill Email: [email protected] Fax: 11+718-881-4219 Tel: +(502) 52089291 Simon Allison Website: www.malidom.hr Website: www.statped.no Fax: (502) 24347934 Email: [email protected] Tel: 0044 7798 882 496 Email: [email protected] CYPRUS National Advisory Unit of Email: comunicacion@fundal. Siblings Network Email: simon.allison@sense. Website: www.nyise.org Pancyprian Organization of the Blind deafblindness org.gt Sabine Kersten org.uk Overbrook School for the Blind Christakis Nikolaides Lise Nes Tel: +32 476 612 879 Jackie Brennan Tel: +357 99657467 Email: [email protected] Email: [email protected] Fax: +357 22495395 Tel: +1 - 215 - 877 0313 Email: [email protected] Regional Center for people with Fax: +1 - 215 - 877 2433 deafblindness Email: [email protected] DENMARK Lise Nes Website: www.obs.org Center for Deaf [email protected] Else Marie Jensen Texas School for the Blind & Mini Corporate Members Tel: +45 44 39 12 50 RUSSIA Visually Impaired - Texas Deafblind Fax: +45 44 39 12 63 Deaf-Blind Support Fund “Con- Project ETHIOPIA: Ethiopian Sign Language and ZAMBIA Email: [email protected] nection” Cyral Miller Ethiopian National Deaf Culture Program Unit Deafblind Association of Website: www.cfd.dk Dmitry Polikanov Tel: +1 512-206-9225 Association of the (EthSL & DC PU) Zambia Tel: +7 (495) 212-9209 Fax: +1 512-206-9225 National Board of Social Services Deafblind (ENADB) Andargachew Deneke Simate Simate Email: [email protected] Email: [email protected] Marianne Disch Roman Mesfin Tel: +251 11 1 23 97 55 Tel: +260977588049 Website: www.tsbvi.edu/deaf-blind- Tel: +45 – 41 - 93 24 65 SINGAPORE Tel: +251 11 1 55 50 56 Email: andargachew.deneke@ Email: simate1968@gmail. project Email: [email protected] Lighthouse School Email: [email protected] aau.edu.et com Website: www.dovblindfodt.dk Koh Poh Kwang Helen Keller National Center for Tel: +65-2503 755 Deaf-Blind Youths & Adults Danish Parents Association Fax: +65-2505 348 Nancy O’Donnell Vibeke Faurholt Email: kohpohkwang@lighthouse. Tel: 011-516-944-8900 Tel: (45)+98854332 edu.sg Email: [email protected] Email: [email protected] Website: www.hknc.org Center For Deafblindness and Hearing Loss