December 2017Download PDF version
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European Association of Cochlear Implant Users
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Fax: + 352 44 22 25
This last year quarter ended with the annual celebration of the European Disability Day in the European Commission during the 4/5th December, as well as with the 4th European Disability Parliament inside the European Parliament on the 6th December that is celebrated once each term in office. EURO-CIU was invited to all the events, and we talked about accessibility, disability rights, etc. Thanks to the efforts of the last few years, EDF (European Disability Forum) and us in our shared part, EURO-CIU, we all are overjoyed to announce the European Council has accepted to start the trialogs (dialogs) and negotiations between the European Parliament, the Council and the Commission about the #AccessibilityAct during 2018. We will keep working to have a Strong Accessibility Act! And make Europe administrations and politicians to stand by their words of support and uphold our rights as #WeAreCitizens and vote too!
I want to highline as well, EURO-CIU joined a stakeholders Coalition to raise awareness among the European policy makers on the social and economic impact of hearing loss and ear diseases with the "Manifesto on Hearing Loss and Disability” of European Health First. http://healthfirsteurope.eu
Finally and before I wish you happy holidays, I would like to remind all EURO-CIU members and friends to share all your activities for next Cochlear Implant Day, that as you well know, it will be celebrated next 25th February and wish you success in raising awareness on Cochlear Implants using the Hearing Loss Manifesto or the Spend2Save Campaign that is been getting momentum and support from all over Europe thanks to all of your translations and work, as you will read in the articles below.
I am proud of all your work this year. I wish you a happy new year and I will see you next in Barcelona.
Message from the Editor
Many thanks for all your contributions - it's good to hear from a number of different countries! And we are also grateful to the cochlear implant companies for keeping us up to date. I know that it's a busy time of year, so it’s good to hear from you.
Please feel free to forward this Newsletter to Members of Parliament, friends, colleagues and members of your own organisations. We are keen to increase the number of people who can read about the benefits of cochlear implantation. Let’s get the message across, particularly as we develop Spend2Save - please see separate article, bringing us up to date on this campaign.
It just leaves me to wish you all a very Happy Christmas and a contented and peaceful New Year.
… and see you in Barcelona in April for the EURO-CIU Symposium and General Assembly!
Brian Archbold (Editor)
Spend2Save: a working group meets in Brussels, Nov 2017
(Photo: some of those attending the working group - full list at end of article)
EURO-CIU has been a great supporter of the campaign Spend2Save since its launch in September 2016, where Teresa Amat spoke. At the EURO-CIU General Assembly in Helsinki in April 2017, Brian Lamb spoke on public health policy and action to promote increased access to hearing care across Europe. The message to public and politicians is that if we manage hearing loss well we can change lives and save society money.
The summary of the report, Spend2Save, has now been translated into nine languages, with the help of many members of EURO-CIU, and it has been used in a number of countries to influence public policy with use with government officials. At a recent working group meeting in Brussels, representatives of these countries and of European organisations such as EFHOH, AEA, EURO-CIU, The Ear Foundation, ONICI, the President of the International Federation of Otology and representatives of industry, met to share the activity so far and to prioritise the next steps. The work is in line with the resolution on hearing care which was passed by the World Health Assembly in May 2017. There was huge support for the work already being done in individual countries and for a working coalition to be established to support collaborative work and advocacy for better hearing care across Europe.
“Why don’t we start this group as a working coalition. It’s one thing to be part of a coalition and another to be working in a coalition.”
The need for user groups such as EURO-CIU to drive the action and for each country to develop its own Action Plan on hearing loss with an implementation plan is key to moving on the campaign. This will include greater access to technology, and campaigning for Adult Hearing Screening. Teresa Amat and Laia Zamora attended in their roles with EURO-CIU, and shared their discussions they had had with Laszlo Lovasky, member of the UN Committee of the Rights of Persons with Disabilities and with Adam Kosa, MEP and the advice that this is a long-term campaign, which needs the inclusion of labour economics and cost effectiveness. They also shared activity on the EURO-CIU website, where we will be putting each translation together with the reports of work undertaken on Spend2Save in each country and at a European level.
“We prepared a special section of our website, with the logos of everybody involved. It’s not a EURO-CIU campaign it’s a campaign of all of you. We wanted to show unity…… We invite you all if you want to share some news with us you can include it… and download all the documents…..”
A pull-up has been developed for Spend2Save which others can use. It was excellent to see how much other countries and organisations are doing and we look forward to sharing the Spend2Save campaign with others in this way and moving on with greater hearing care across Europe. The report of the meeting with the actions will be available at www.eurociu.org/index.php/en/spend-to-save.
Mark Laureyns encouraged everyone to sign-up for the Manifesto (see next article), which contains much of the Spend2Save logic
Have a look at the Summary of Spend2Save – there is a link to a pdf from the EURO-CIU website – see www.eurociu.org/index.php/en/spend-to-save and the full report with various Adult CI Strategy Reports can be downloaded here.
“WHO and this (Spend2Save) combined together is really important and we have a great opportunity”.
(Attending the meeting in Brussels were: Teresa Amat, Brian Archbold, Sue Archbold, Lidia Best, Ervin Bonecz, Shelly Chadha (by video), Beatrice Cusmai, Leo De Raeve, Patrick D’Haese, Bernard Fraysse, Brian Lamb, Mark Laureyns, Erwin Offeciers, Kris Petre, Niels Pontoppidan, Mike Sundler and Laia Zamora)
Sue Archbold, Brian Lamb and Mel Gregory (The Ear Foundation)
Hearing Loss and Disability launches its Manifesto
(Photo - meeting in Brussels: Brian Archbold, Teresa Amat, Mark Laureyns, Beatrice Cusmai and Ervin Bonecz)
The Coalition on Hearing loss and Disability demands concrete actions to tackle hearing loss and improve access to hearing technologies
“Innovative hearing devices, such as cochlear implants, can make a real change in the lives of people with severe hearing loss. We must ensure access to these technologies to overcome any barrier to communication and quality of life”
Teresa Amat, EURO-CIU President, and some of the EURO-CIU Board met with Mark Laureyns in Brussels to reach an agreement. She comments that "as members of EURO-CIU, you can use the Manifesto".
The following was then issued on 30 November, 2017
Health First Europe, the European Federation of Hard of Hearing People (EFHOH), the European Association of Hearing Aid Professionals (AEA), AGE Platform Europe, EURO-CIU, the European Hearing Instrument Manufacturers Association (EHIMA), The Ear Foundation and the International Federation of ORL Societies (IFOS) join hands to promote actions to tackle the impacts of hearing loss and improve access to hearing devices.
Our Coalition aims to raise awareness among European policy-makers on the social and economic impact of hearing loss and, therefore, to facilitate the adoption of “ad-hoc” effective policies. For this purpose, today the Coalition presents for the firrst time the Manifesto on Hearing Loss and Disability: throughout its calls for action, we want to protect the participation of people with hearing loss in their communities as well as stress the need to develop a concrete strategy for hearing care into primary health care system.
In Europe 10% of the total population (52 million people) self-report to experience hearing loss, 73% consult a medical professional, but only 50% are referred to hearing care professionals.
Mark Laureyns, AEA President, remarks that “Hearing loss is a huge problem for the health of Europe’s citizens: this disability puts huge pressure on Europe’s social care systems if left untreated. It is time to act to improve access to innovative hearing technologies and professional hearing care!”
“Together we have produced the Manifesto to ensure that the needs of persons with hearing loss are at the heart of public policies: EU institutions are called to take the lead in ensuring that access to professional hearing care is a right and to develop a European strategy on hearing loss focused on equality, prevention and rehabilitation”, said Marcel Bobeldijk, EFHOH President.
“As Europe’s population ages, the burden of hearing loss will increase. We must act to protect older people’s rights and promote their participation in society!” Anne-Sophie Parent, Sec. Gen. AGE Platform Europe
Teresa Amat, EURO-CIU President, commented “in line with the principles of the U.N. Convention on the Rights of Persons with Disabilities, the EU should take the lead in ensuring access specify our collective to assistive technologies such as cochlear implants and enhancing participation and inclusion to our group as citizens with full rights in our society”
You can download the Manifesto and read our calls for action here
We welcome anyone who supports our goals to promote the Manifesto and to spread our message!
Follow our campaign on Twitter and LinkedIn #TogetherToHear
For more information, please contact: info@health_rsteurope.org
European Disability Day
On December 4 and 5, the European Commission, in collaboration with EDF (European Disability Forum), organized a conference to commemorate the International Day of Persons with Disabilities, under the slogan "We are citizens of the European Union", where EURO-CIU was present.
Mrs. Emmanuelle Grange, Director of the Unit of Disability and Inclusion of the European Commission, opened the conference and stressed that not only must we ensure that people with disabilities are better informed of their rights, but also can make their voice heard, because political participation is essential for all the citizens of Europe.
During the first day, Michel Servoz, Employment, Social Affairs and Inclusion General Director of the European Commission, spoke about the inequalities that still persist in Europe, giving the example of the high unemployment rate of people with disabilities: "The employment rate of people with disabilities is 48% and only 28% have finished a higher education. This gap is huge and not acceptable ".
With his habitual forcefulness, the president of the EDF, Ioannis Vardakastanis declared that: "To be a citizen means to be able to exercise your rights, to be part of society and not to be cornered, and this is why we must continue fighting, to be considered also citizens of the European Union."
During the subsequent debate, EURO-CIU intervened with the panellists, asking for total accessibility, including breaking the barriers of communication in the cities, since deafness is an invisible disability; even more so when cochlear implanted patients have different needs than the deaf signers. EURO-CIU as a counterpoint made a formal request to include a recommendation by the European Parliament that all ads, promotional videos, etc. related to the upcoming 2019 Union elections will be subtitled in all European countries and thus, be able to be really informed during the political process and be able to defend our rights at the polls.
The second day focused on how EU cities could be sustainable, accessible, inclusive, etc. In this context there was an interactive panel with cities across Europe together with politicians from the national and EU level. Madeleine Kayser from Luxembourg commented that "the accessibility of a city should evolve, since as needs are known we must implement the solutions", while Lara Méndez, mayor of Lugo, who received a special mention to Accessible City in last edition, he said: "we had to adapt spaces to people and not people to spaces".
Accessible City Award 2018
As every year, the Accessible City Awards are unveiled during the celebrations of the day of disability (December 3). The European award rewards cities for their efforts to ensure an environment accessible to all.
The awards were presented to the representatives of the winning cities by the European Commissioner for Employment, Social Affairs, Skills and Labour Mobility, Marianne Thyssen, and the Vice President of EDF, Ana Peláez.
The Accessible City Award 2018 went to Lyon (France). While the 2nd prize went to Ljubljana (Slovenia) and we were really happy the 3rd prize went to the City of Luxembourg (Luxembourg), our headquarters city! In addition, a special mention was made on accessibility for adaptations in historic centres to: Viborg (Denmark).
European Friendship Week 2018
European Friendship Week 2018
Our 8th residential for young people from across Europe, aged 11 to 16 years old, who wear a cochlear implant.
Sunday 22nd to Saturday 28th July 2018
European Friendship Week is a fun packed week for young people who wear cochlear implants. It aims to help young people grow into their potential. The week’s activities focus upon developing leadership and team working skills in the young people. It aims to strengthen their ability to face challenges and grow in independence always promoting a positive self-esteem and self-identity. There is a big emphasis upon valuing different cultures and communities and of course lots of opportunities to practise speaking English and experience many traditional English things.
Come and join us for an action packed week. It’s all about having fun, meeting people from across Europe, having a cross cultural experience, practising speaking English, and developing leadership skills.
A real life changing experience, including trips out, sports, team challenges, games and themed activities. Every day is different and lifelong friends are made.
“Thank you for making this event happen, our son loved every minute of it.
It is such an amazing experience”.
The UK government inspection awarded The Ear Foundation residentials as OUTSTANDING in all areas in 2017.
Want to join us next year from Europe?
All you have to do is:
Want to join us from the UK?
20 years of the European Disability Forum
The EDF has collected photos of key moments in its 20 years of existence. Founded in 1997, the EDF has grown into a European disability movement with representation in all European Union (EU) Member States and beyond. The EDF has been helping people with disabilities and their representative bodies to come together and speak with one voice. Together with our members and partners, we are fighting for a more inclusive society with equal opportunities for everyone.
European Disability Day
This week, I have been in the European Commission celebrating the European Disability Day, as well as in the European Parliament in the 4th European Disability Parliament.
During these 3 days, one of the main topics has been the right to vote of the disabled persons.
EDF (European Disability Forum) is leading a campaign to ask that the next 2019 European elections to be accessible to all citizens.
In that regard, I think EURO-CIU should make their own contribution, asking all the Members of the Parliament to make their communication (advertisements, political debates, etc.) accessible for 2019. If the European Disability Movement is going in that direction, we should take advantage of it and ask for accessible advertisements.
I will prepare a letter following the European laws and regulations, and I will ask you, when I have it, to translate it in your own language, so you can send it to your own country MEPs, but first, to do the letter I would like to be able to compare different country situations.
So, my questions are:
1 - Does your country subtitle / caption the political advertisements in TV?
2 - In social media?
If the answer is yes: - all political parties? only a few? which ones?
3 - Do you have accessibility to communication in Political Debates?
If yes: - only presential? or on the TV? or in the Media?
4 - Do your answers change if the elections are local, regional, national or European?
Remember this will work better if I have as many answers as possible! If you do not know all the answers, do not worry, just answer what you know!
31 January: Deadline to Apply for EDF - Oracle E-Accessibility Scholarship for Students with Disabilities
EDF and Oracle offer a scholarship to a student with a disability who is currently enrolled in a high education programme in the area of Computer Science, Computer Engineering, User Experience, or related field. This includes Bachelors, Masters and PhD students. The recipient of the EDF - Oracle e-Accessibility Scholarship will receive a 7.000 € scholarship for the 2017-2018 academic year. The Scholarship will be awarded primarily based on a project or thesis in which the needs of persons with disabilities in terms of accessibility to ICT (e-Accessibility) are taken into consideration, and/or an innovative solution to enhance their access is proposed. The project must be an integral component of the educational programme undertaken by the student, e.g. final year assignment, or part of their Masters or Ph.D. The project may already be underway, or be a proposal.
For further details, including criteria, eligibility and the application process, click here.
Lehnhardt Stiftung shows presence in 5 countries and meets hundreds of families with deaf and hard of hearing children and local experts during the last three months
(Photos from the 5 countries visited)
In early September we took off to Yerevan (Armenia).
We have travelled there since 2004, when I started the Cochlear Implant Programme in this wonderful country. By now we have approx. 100 children with CI, unfortunately until today without any support from the local government. We rely on sponsors from the US, Australia, Russia and Germany. Sponsors love to donate for a child and give her / him access to hearing. They are not so fond of spending money on children who have implants already and who are in desperate need of a new speech processor. I saw some, who cannot attend mainstream school any longer because their more than 10 years old speech processor is not functioning any more. We decided to initiate a speech processor donation programme – families in countries, where children are “entitled” to get an upgrade SP are willing to donate their old one which is not needed any longer. The manufacturer agreed to provide repair service free of charge and necessary new components for a charity price.
We had a couple of these in our suitcase and we had quite a number of candidates!
Our suitcase was empty when we left Yerevan and we promised to be back with a full suitcase in the very near future.
Our next “stop” was Kiev (Ukraine).
We had reserved the conference room of the Kyiv Cityhotel, which can hold some 50 people and we were a bit afraid, it may be half empty. But then: Nearly sixty families with hard-of-hearing or deaf children from every corner of Ukraine had travelled up to 9 hours for a face-to-face meeting with me. I was overwhelmed! Why would parents (some with their children) take this on them? Maybe because they really appreciate what we have achieved over the past three years, while Ukraine’s state cochlear implantation program was stymied by lack of funding. The Lehnhardt Foundation in cooperation with Ein Herz fuer Kinder helped more than 100 children in Ukraine get their cochlear implant. The support came both in the form of funding and through supplying refurbished sound processors donated by German recipients for those who could not afford an upgrade.
In line with the philosophy of the Lehnhardt Foundation, the mission of which centres around support to early detection of hearing loss, provision of a cochlear implant where necessary and an inclusive approach to education and society, the program of the meeting was built around the needs of the parents rather than a particular presentation. I made a speech at the beginning of the event about the activities of the Foundation and the trends towards individual solutions in cochlear implantation.
This was followed by a session of questions and answers, centring around the subjects which parents of children with hearing loss are most concerned about: “What is the best age for a first cochlear implant?”, “Would you recommend a bilateral implantation with more than 10 years between surgeries?”, “What happens to residual hearing during a CI surgery?”, “How quickly is my child expected to speak after switch-on?” It was refreshing to have both experts (fitting engineer D. Litun, SLP S. Zayika, Infoton Director S. Chaika, teacher V. Shevchenko, Cochlear consultants A. Flanagan and D. Zayika) and experienced parents answering the questions from a deep but personal perspective.
After the meeting came to an end, it took a long time for the group to disband. There was much to share, many words of gratitude, much genuine kindness and humanity from all sides. Again, I promised to come back next year. Even though state-funded implantations have been restarted in Ukraine, there is still a backlog of children who might not get their implant until it is too late – unless sponsors intervene. And the PORA program is a learning platform that everyone interested in hearing technologies is welcome to use – this is how the Foundation will continue supporting its beneficiaries, years into the future.
Russia was our next country of destination – a scientific conference in Suzdal with very emotional moments and another conference in Kazan, A very “different place”
The beautiful and historic place Suzdal is very familiar to me, because this is the place, where every second year a high level scientific conference takes place, organized by Prof. Dr. George Tavartkiladze, the head of the Russian Institute of Audiology and Hearing Rehabilitation.
I have the privilege to be invited and to be given the opportunity to present on a current topic of interest. But his time my Russian friends had a big surprise for me.
When I ended my presentation, a young gentleman entered the stage and reminded me, that he received his CI in 1993 in my home country, Austria. I was really moved to see him so confident and outspoken and here is his story in his words:
“In 1992, when I was a boy of 12, I was struck down with meningitis. It felt like a prolonged, exhausting nightmare with hallucinations I can recall to this day. That summer many children were sick; two girls in the infectious wards next to mine did not make it. But I, being tough and fit, survived, after being fed with antibiotics for weeks. I lost my hearing to one of those: the meningitis, or the pills. I don’t remember how rapidly it went: as I hovered on the brink of consciousness, I couldn’t tell whether it was voices I heard or hallucinations inside my head”
After the initial recovery, Alexander’s family waited anxiously for his hearing to return. That never happened. He learned lip-reading, and in that post-Soviet era of the scarcity of absolutely everything, the boy would have gone on to learn sign language and carried on deaf.
It was only a chance visit to the Institute of Audiology and Hearing Rehabilitation that alerted Alexander’s family to the existence of cochlear implant technology. At last – a chance to restore his hearing during one of the trial surgeries that were happening in Russia at that time. That was not to be – and with no places left and time running out fast, the family seized the chance to go to Salzburg for the Austrian trial surgeries instead. An extraordinary combination of good luck and goodwill led to the purchase of Alexander’s CI, and a few months later he was on the operating table, with Dr. Roland Laszig and Dr. Ernst Lehnhardt as surgeons. Present in the operating theatre were the most renowned specialists in the field, including the then head of Cochlear Europe, Dr. Monika Lehnhardt.
“The support that Monika Lehnhardt gave to my rehabilitation and further progress made it possible for me to live the life I have lived. After my initial switch-on in May, I went back to school in September, sitting in class with my old school mates. It was incredible”.
Fast-forward the tape to 2017, and meet Alexander as an accomplished 35-year-old who went on to achieve a University degree and excel professionally.
Early November Bishkek (Kyrgyzstan) called.
Another fascinating country with wonderful people who deserve full support.
Again, it was not my first time. And again, the reason was, that we were able to raise funds for 5 children to get their CI. In total we have 20 and this over a period of nearly two years.
Unfortunately, as in Armenia, there is no governmental funding yet and we need to rely on sponsors. In this case mainly from Germany and Turkey. We have full support from the team of Prof. George Tavartkiladze from Moscow and Prof. Vladimir Fedoseev – a very experienced surgeon and wonderful personality – performed again all surgeries for our little protégés.
We met with more than 70 parents, some of them with children who have CI already, some of them who are waiting. Like in the Ukraine, like probably in all countries of the world, they had lots of questions and we took time to answer them. I was very lucky to have a lady expert – Marina Gureva from St. Petersburg – with me, who is one of the most experienced therapists in Russia and she had individual sessions with parents and their children but also had a full day workshop for 30 local experts who received their certificate after a long and highly interesting day.
I assume you already expect what I had to promise: come back again next year!
Mid November Tbilisi (Georgia) was the Finale for this year.
The topic was “Neonatal Hearing Screening”, which has started in this country some time ago and which should cover the whole country by mid next year. This project is supported by the European Union and we had Karl White (Utah) as one of the leading experts in this field together with Peter Böttcher and Dr. Bodo Bertram from Germany to share their knowledge and experience in the field of screening and (re)habilitation with local representatives from various Ministries, hospitals and schools. I presented on “Ethical Aspects” and advocated that NHS needs to be done regardless of whether all children identified as candidates for a cochlear implant will in fact finally get one. I suggested that also for these families it is of paramount importance to learn about the hearing impairment of their child as early as possible because only then they can start to support their child in her/his development in the most critical phase of her/his life.
And here again, the news had spread that we were there, and parents came to meet us. Together with Dr. Bodo Bertram we answered many, many questions, we discussed with representatives of two parents´ associations, which started lobbying effectively for better support for their children and shared ideas from other countries, where governmental funding not only for cochlear implantation but also for adequate (re)habilitation has been achieved.
And, in Tbilisi, Bodo and I promised – we will be back soon!
AUSTRIA - The right to hear
(Photo: Marialla Sturz (centre) and her mother Dominique Sturz (left); and Maria Rauch-Kallat)
November 20th the hearing community celebrated “Universal Children’s Day”, also known as “International Day for Children´s Rights”. One in thousand infants in Austria is born deaf. Even though “the right of hearing” was not mentioned within the “Convention on the Rights of the Child” by the United Nations, the tremendous effects of hearing on a child’s development and possibilities could be translated as an “indirect right of a child”.
The “right of hearing” was the topic of a round table held in October this year. Two Cochlear Implant (CI)-users, who were implanted when they were infants, and their mothers met with CI-surgeon and CIA-president (Cochlear Implant Association) Prof. Dr. Wolf-Dieter Baumgartner to discuss their experiences after the life-changing intervention.
Mariella Sturz, one of the debaters, was less than two years old when implanted on the first side. Now, 19 years later, she is a successful law-student with an exceptional career ahead. Her mother, Mag. Dominique Sturz, summarizes the positive effect of the CI’s as follows: “With the help of the Cochlear Implant a new world opened up for Mariella – a world which would have not been accessible for her otherwise. This includes social contacts, leisure time-activities, access to education without the barrier of not hearing and her own personal independence. This also means not being dependent on social assistance benefits.”
Mag. Susanne Adzic-Frey, mother of 13-year old Sophie Adzic, pointed out the difficulties in some regions of Austria to find adequate speech therapy and assistance in school. Nonetheless Sophie attended mainstream school and is about to change to high-school.
The round-table was moderated by Maria Rauch-Kallat, an active Austrian politician until 2011, who campaigned during her career for introduction of early intervention in Austria. The round-table was the perfect platform to enhance awareness amongst the public regarding the effects of hearing and hearing problems and the possibilities of Cochlear Implants and the “indirect right of a child to hear”.
For almost 40 years until today, science and technical advances allow deaf people to hear via Cochlear Implants - for more than 20 years very young infants can also benefit from this life-changing intervention. This is especially important as it is well known, that only early implantation makes audio-verbal communication possible, especially in children born deaf, opening up new horizons of life.
AUSTRIA - “Das goldene Ohr” 2017
(Photo: DasGoldeneOhr – the winners)
For the second time the association ‘vonOHRzuOHR’ awarded “Das goldene Ohr” - German for: “the golden ear”. This association shares information and gives support to adolescent and adults concerned, as well as their employers, regarding all matters of hearing and hearing difficulties. This year, 13 companies and institutions were awarded for introducing solutions for people with a hearing handicap. Initiator Birgit Laux-Flajs about the story of success: “The high number of submitted projects proves that hearing problems and adequate solutions receive more and more awareness. All the innovative and interesting contributions made the decision of who should win the price very difficult.”
An honorary prize was awarded to Prim. Dr. Thomas Keintzel, Director of ENT-department, Clinic Wels-Grieskirchen, for his commitment for deaf and hard-of-hearing patients in Upper Austria. He is a well-known surgeon for Cochlear Implants and other Hearing Implant Systems.
The price for special innovations was sponsored by MED-EL. This prestigious price was granted to the group Realsim for their very special hearing-aid eyeglasses, the so called “HOLODEAF”. The innovative device transfers spoken text to written text and displays it onto the glasses – similar to subtitles. Thomas Peterseil developed in cooperation with FH Upper Austria the HOLODEAF – his motivation was to offer deaf people an additional possibility to communicate. HOLODEAF requires an internet connection to convert from spoken to written information and unfortunately – for now - it only works in English.
Another honorary price for their barrier-free set-up for the hearing-impaired community was awarded to the Regional Theatre Linz, the Bank ‘Sparkasse Upper Austria’ and the Cultural Center ‘Bruckmühle’.
CZECH REPUBLIC - Project on the inclusion of HI children in the mainstream first schools
(Photos from the first workshops at schools. The children were drawing their "ideal school".)
I would like to introduce you to a project that we have in the Czech Republic and that is focused on the pupils with hearing loss and are included in the mainstream first schools (children 6-12 years old). It is supported by the Ministry of Education, Youth and Sports and ESIF of the EU. Our project is called Experience to Understanding and started on the first September 2017.
The main target of the project is to create convenient methods of teaching for the mainstream first schools where a child with hearing loss is included. It doesn’t simply mean to explain to teachers how to speak, where the child should be seated in the class, etc. It means the teacher would get a concrete method, concrete plan of a lesson that he or she could simply take and use. We would like the final publication to be the easiest to use as possible. So, if you are a teacher of – let’s say – math in the 3rd grade, you open the book (or our web pages), find your subject in the index, find your grade you teach and get several possibilities what could you do and how.
We are going to use several approaches. First of all, we would like the classes to be more visual and kinaesthetic. We also think that it would be helpful for the schoolkids to learn to think about things themselves, which is not exactly the skill that is usually taught at Czech schools. And finally, we target on the socio-emotional skills of the pupils.
The second branch of the project is an exhibition on hearing and sound. This part of the project is carried out by the Gift of Hearing Foundation (Nadační fond Dar sluchu). The visitors to the exhibition will find out how the ear, middle ear and inner ear are functioning; they will try a simulator of a hearing loss, so they would have a first-hand experience; they will discover the sound as a vibration, etc. The exhibition will be mobile and will visit all the schools involved, but also other places. When not “on the road” it will be possible to visit it at the address of the Gift of Hearing Foundation, which is in Prague city centre.
And finally, the third branch of the project is a Drama club for the children (6-12 years old), where they would practise their socio-emotional and communication skills. It has to be inclusive again, so there would be cooperation between children with the hearing loss and other, normally hearing children. They would practise there how to deal with difficult situations, how to manage fear, how to ask for help, what to do when someone experiences bullying, etc.
As the project is still in its beginnings, many things are still just “on the paper”. But we are enthusiastic, and we believe it will be nice and have success. There are eight schools, 12 teachers involved. All of them are ready to test our pilot methods and approaches. We have 3 years ahead.
We would be grateful if you have similar projects in your respective countries, or if you – personally – are a teacher, or anyone who could tell us their experiences, to share it with us, so that we have more material to use and work with. I would like now to thank Teresa Amat, President of the EURO-CIU, who has already sent me some material from Spain.
FINLAND – launches 112 SMS service for deaf people.
Since first of December 2017 Emergency SMS can now be sent to the 112 service number. The SMS users are required by law to register in advance with the Emergency SMS Service. The SMS Service is primarily designed for the individuals who cannot hear or produce the speech. However, anyone can sign up for the service. Initiating the use of a national 112 emergency SMS message is a major improvement in the accessibility of emergency services.
During law preparation in Finland, registration with the Emergency Service was considered important in order to prevent vandalism and secure access to the service. It was long waiting for new system, there were difficulties to get money from state budget and find the good technical solution.
Meanwhile the regional emergency SMS numbers were used until now. This will be will be taken out of use at the end of 2018. The long transition period is a way to ensure that no one is left without emergency assistance due to the change of number.
Towards the end of 2018, an automatic reply message will be attached to regional emergency SMS numbers, directing people to register as users of the new Emergency SMS Service.
ERC operators need to use SMS messages to ask the same basic information from the individual sending an emergency SMS as from those making an emergency call and to make a statutory risk assessment on whether to dispatch emergency assistance or not.
In case of emergency, everyone should ensure that person receives help as quickly as possible by sending as much information as he/she can in the very first SMS message. The processing time of an emergency notification will increase if several messages need to be sent back and forth.
The caller should also know the precise address or map coordinates of the location, especially in the case of leisure premises. These should be established beforehand to enable proper directions to be given. It is possible to get 112 Suomi application to your mobile, the coordinates of your location are sent automatically to the emergency service dispatcher.
In communications related to the Emergency SMS Service, the Emergency Response Centre Administration has worked in close collaboration with the Finnish Federation of Hard of Hearing (Kuuloliitto) and the Finnish Association of the Deaf.
HUNGARY - 10th Anniversary of the Hungarian Cochlear Implant Association (MACIE)
Hungarian Cochlear Implant Association celebrated the 10th Anniversary by an international event on 26 October in a leading theatre in Budapest. The patron of the event was Dr. Zoltan Ónodi-Szücs Health State Secretary.
The venue was unusual but warmly welcomed by the participants, and it fitted perfectly well with the key messages of the event, presented by Ervin Bonecz, president of the MACIE and Vice President of the EURO-CIU. He started his welcome speech with a small part of Shakespeare’s “As you like it”, followed by parallels between theatre and cochlear implants. He said:
"The creation of a theatrical performance requires real teamwork in which all individuals have their roles and responsibilities. Of course, no performance would be possible without dressers, light technicians or an audience. The players are also present on the stage of cochlear implantation: the CI candidate, the surgeons carrying out the operation, mothers and fathers, friends, physicists, surdology specialists, the Hungarian Cochlear Implant Association (MACIE) and many others, some of whom are sitting in this room right now. In the past few years the CI “Theatre” has had significant achievements, for which we must thank profoundly the enthusiastic and dedicated players."
The program of the event was very impressive thanks to the excellent theme and speakers from Hungary and abroad. Professors, teachers and therapist ran exciting presentation, and CI users shared their touching stories with the audience of 150 people. The two key speakers came from the University of Helsinki. Ritva Torppa and Minna Huotilainen enchanted the audience and it seems they made the first steps to make possible a co-operation between the Finnish and Hungarian universities.
Teresa Amat, President of the EURO-CIU sent her video message which is available on the following link: https://www.youtube.com/watch?v=3Sy-v7Dzq5Q
Hungarian Television’s crew attended the event and made a program for the M1 Channel. It is available on this link: https://www.mediaklikk.hu/video/esely-2017-12-09-i-adas-7/ (the CI block starts at 10:30).
Hungarian Radio also made interviews in the morning then presented in Hungary’s most popular program called “Closer” in the same afternoon.
MACIE would like to say a big thank to LAPCI in Finland to make available the lovely photos about the CI users teenagers.
And finally, but not least special thank for the support of the MED-EL and Cochlear and the Hungarian distributors, Victofon and Amplifon for the generous support in the last 10 years!
Keep running, MACIE!
ROMANIA – the 15th Balkan Congress on Hearing Implants and Hearing Aids
(Photo - Speakers at the Congress)
Between the 19th and 21st of October this year, the city of Iasi, located in the north-eastern part of Romania, was the host of the 15th Balkan Congress on Hearing Implants and Hearing Aids, sponsored by MED-EL.
The Congress was supported by the Clinical Rehabilitation Hospital of Iasi under the patronage of Prof. Dr. Luminita Radulescu (president).
There were more than 100 participants including ENT physicians, audiologists, speech therapists and psychologists from Austria, Republic of Moldavia, Bosnia, Bulgaria, Croatia, Hungary, Romania, Serbia, Slovenia and guests also from France, Israel and Lithuania.
The list of speakers, comprised of 37 renowned specialists from different Balkan countries, were gathered.
The program was centred on auditory implants with topics such as, Hearing Loss Screening, Audiological Evaluation of CI Candidates, Outcome of Cochlear Implantation, Quality of Life after Cochlear Implantation, Benefits of Hearing Aids Prior to CI with the title, "Is it necessary to wear hearing aids before implantation?", CT-scan and MRI Evaluation, Congenital Malformations of Inner Ear / Cochlear Nerve Hypoplasia, Complications and Difficulties in CI.
The participants took great interest in the scientific program. Each session ended with interesting questions and discussions. Also, a workshop on tips and tricks on how to adjust cochlear implants was presented.
The interdisciplinarity was reflected by the large number of participants from different specialties. In addition to professionals, participants also included representatives of associations which support cochlear implanted patients.
A memorable and rewarding moment was highlighted by the session in which patients with cochlear implants took centre stage and the parents of the children with C.I. took part in interactive workshops with speech therapists and were encouraged to ask questions and share their experiences and the importance of C.I.
The Friday sessions ended with a relaxing visit to one of the most prestigious wineries in the country and in Europe (listed in Europe's top ten wineries). Here, congress participants were able to enjoy international gold award wines and traditional Romanian dishes.
The Organizing Committee of the Balkan Congress decided that in 2019, the following edition of the Congress will take place in Macedonia.
SPAIN - Young CI Users meet Minister of Health
(Photos: Meeting with Dolors Montserrat)
This past November we received the visit of the Honorable Mrs. Dolors Montserrat, Minister of Health, Social Services and Equality. She met a group of more than 20 teenagers between 12 and 20 years old from all over Spain.
The boys were able to exchange experiences with the Minister. They talked about their last AICE Federation Camp and the European Friendship Week. They explained that it is a great opportunity to meet other young people like them. The Minister, for her part, was very interested in knowing the professional plans of the boys and girls.
"I was impressed to speak with the Minister, she understands that we are the voters of the future, she shows interest and she cares about the needs of ci users", explains Jana, 17 years old.
Dolors Montserrat affirmed that principal goal of her Ministry is to guarantee a future in equality: “I’m proud knowing the projects these guys have. We must guarantee the education rights (at school, at the University) and look at these people, watching their capacities and not their disability. They are the future of this Country!”, explained the Minister.
SPAIN - Successful XX AICE Awards
(Photo: The winners and guests of honour pose with Joan Zamora)
On Saturday, November the 4th, the Federación AICE presented the XX AICE Awards, in a ceremony that gathered 130 affiliates, partners and professionals as doctors, speech therapists, commercial firms. People came from all over Spain to the meeting which took place in Barcelona and was chaired by the Minister of Health, Social Services and Equality, the Hon. Ms. Dolors Montserrat. The ceremony was accessible to communication by transcription on screen and we celebrated too the 60th anniversary of the first ci in the world.
The AICE Awards are given to people and entities that during the previous year stand out for any of the objectives from the Federación AICE. The 2017 winners’ were:
Institutional Award: Mrs. Pilar Lima, Spanish Senator of Valencia, a great defender of people with disabilities, and a deaf person herself.
Medical Award: Dr. Serafín Sánchez, otorhinolaryngologist of the University Hospital Virgen de la Macarena in Seville. Since 2008, year of begining CI program, 405 CIs have been carried out.
Accessibility Award: Aptent / Accessible Theater, a company that, through the creation of mobile applications for subtitling, among other services, allows theater accessibility to people with hearing problems.
Media Award: La Tribuna de Albacete is a regional newspaper that promoves the needs of deaf people, users of I.C.. They usually talk about the activities of AICCLAM as well.
Volunteer Award: to prove our gratitude to the effort of the Federation volunteers, we gave the award to María Carmuega, from Galicia.
In 2017, there was an Special Prize, in memoriam, to recognize the work, sympathy, trajectory and struggle that our vice president, Virginia Cuervo, exercised with us for more than 10 years.
SPAIN - Sharing AVT strategies : Not without my parents!
(Photo: Delegates listening to the presentation)
Last October, more than 40 people in Barcelona and 70 in Zaragoza, parents and professionals of children with CI, listened to Eulalia Juan Pastor at “Verbal Auditory re(habilitation)” conferences, organized by Federación AICE. The speaker is a speech therapist, audiologist, certified by the AG Bell Academy since 2012, and is currently working at the Hospital Son Llàtzer, in Mallorca.
The professional shared the basic strategies of Auditory-Verbal Therapy and with audiovisual material showed her evolution as a speech therapist until adopting the auditory-verbal “philosophy”. "Working with families must be a team effort," she explained. The speech therapist should not have the exclusivity of knowledge and strategies to develop language in children with hearing difficulties. It involves creating a climate of trust, adapting to the family model, valuing positive behaviours and, above all, making the language development techniques part of the families’ everyday life. In an active listening environment, without judgments, with freedom and empathy, fantastic results have been achieved, allowing the sessions to be spaced out over time.
Specific materials are not required to develop this kind of therapy. We can just exploit the child's natural environment and their toys, enhancing the symbolic and imitative play. In addition, some technological applications, if used in a shared way with parents, can also stimulate speech and storytelling (Adobe Voice, Little Story Creator, Little Story Maker). We cannot forget how reading is a powerful tool, being a privileged strategy: "Reading 15 minutes for 15 years supposes 27,375 minutes of auditory work, reinforcing also the family bond", concluded Pastor. The audience was very satisfied with the dynamism of the speaker and the shared strategies, wanting to deepen this type of therapy in future conferences by Federación AICE.
TURKEY - 11th Asia Pacific Symposium on Cochlear Implants and Related Sciences
(Photos: Sue Archbold, Gül Erden, Mustafa Koyuncu & Filiz Aslan; and the conference President with some of the speakers)
Cyprus, 19-22 September 2017
11th Asia Pacific Symposium on Cochlear Implants and Related Sciences was held with 736 participants from 37 countries. It is one of the leading events about cochlear implant research. The numbers showed us that the participants were not only from Asia Pacific region, but from all over the world. The aim of the symposium was “promoting productive clinical debates between basic scientists, clinical specialists and researchers on the critical issues within the various aspects of hearing, speech and balance disorders”. The symposium reached its goals on “having the most up-to-date clinical, scientific and academic program, concentrating not only on future therapies and interventions, but also on disease prevention and treatment goals”.
Turkish professionals and EURO-CIU’s scientific advisory board members were remarked by their presentations. Dr. Sue Archbold and Dr. Leo De Raeve presented their speeches as quest speakers. Dr. Leo De Raeve gave keynote speech about “Maximizing the Benefits of Bilateral Implantation in Children and Adults”. Dr. Sue Archbold spoke in 5 different sections and on 5 different subjects. She talked about cochlear implantation in adolescent population to psychosocial development of children implanted at young ages. Both of the speakers and Turkish Cochlear Implant Association President Mustafa Koyuncu explained the problems and expectations of young adults with cochlear implants in Turkey and how the deaf community’s perspective changed about cochlear implantation in time. Mr. Koyuncu and Dr. Archbold informed the participants and the companies about the Spend to Save Project. The booklets of the project were distributed in Turkish and in English to raise awareness on the matter, and they were available on the Stands.
The social program and gala dinner provided more fun time to relax and exchange the ideas together. The 12th Asia Pacific Symposium on Cochlear Implants and Related Sciences will be held Tokyo in 2019.
UK – The Ear Foundation Sounding Board website
Welcome to our new look Sounding Board newsletter and new look webite. The Ear Foundation and Advanced Bionics are excited to have launched Sounding Board with the start of the new school year in September. It is full of fresh ideas and resources around listening, learning, communicating and socilaising, to inspire you as parents and professionals supporting children with hearing loss and those using cochlear implants.
Registration is free and with it you will receive our monthly e-newsletter. Last month’s newsletter focussed on the pre-schoolers, and upcoming topics will include supporting children with cochlear implants at primary school as well as theory of mind and socio emotonal resources.
Here is the website address:
UK - University of Southampton Auditory Implant Service – Scaling up Programme
(Photo: Dr Helen Cullington)
A team from University of Southampton Auditory Implant Service has been selected by The Health Foundation, an independent charity, to be part of a £3.5 million improvement programme.
The Scaling Up Improvement programme supports seven projects in the UK to take their proven health care interventions and approaches and make them work at larger scale to have a positive impact on patient outcomes.
The initiative from the University of Southampton Auditory Implant Service will roll out successful telemedicine tools for adults with cochlear implants across the UK.
Dr Helen Cullington, Clinical Scientist at the University of Southampton Auditory Implant Service and Project Lead said, “People with cochlear implants need lifelong follow-up at one of only 18 centres in the UK. We are going to scale up a successful remote care pathway, and offer the improvement to all centres across the UK. Patients can choose to use a personalised online support tool, home hearing test and support to adjust devices. We hope to see more empowered and confident patients, better access to care, stable hearing and a more efficient clinic.”
The programme will run for two and a half years and each project will receive up to £0.5 million of funding to put their project into practice and evaluate it.
Sarah Henderson, Associate Director from the Health Foundation said: “We are very excited to support seven outstanding project teams who have been selected because of their expertise in scaling complex improvement projects, and their ambition to achieve impact by improving care for patients.
Working together, as part of the Scaling Up programme, we aim to make sustained improvements to health care by testing out proven interventions at a scale. We hope to see the interventions being widely adopted across the UK.”
The University of Southampton Auditory Implant Service will lead the telemedicine project and will work in partnership with a wide range of organisations to deliver the project, including University of Nottingham, Newcastle University, Wessex Academic Health Science Network, The Ear Foundation and the National Cochlear Implant Users’ Association.
For more information visit: http://ais.southampton.ac.uk/research-consultancy/remote-care/
UK - September 2018 intake for Educational Audiology - limited Scholarships available
(Aerial photo of Mary Hare School)
In the past half century since the start of educational audiology in the UK, paediatric cochlear implants have become a well-accepted evidence-based intervention for babies and toddlers with significant hearing loss. The only professional course for training educational audiologists to bridge the gap between health-trained audiologists, Teachers of the Deaf; and families has played a key role for children use cochlear implants. The course has now been endorsed by the British Academy of Audiology and educational audiologists are seeking professional registration.
Highly variable roles and competencies of an educational audiologist (per British Association of Educational Audiologists) fall under these main following categories each of with involve managing cochlear implants: child and family support, educational assessment, inclusion advice, in-service training for both health and education, educational and personal amplification systems, multi-professional working and audiological testing.
Oticon Foundation has supplied two full scholarships for the September 2018 entry to the MSc/PGDip in Educational Audiology course at Mary Hare partnered with University of Hertfordshire.
Evidence for the value added by educational audiology is demonstrated anecdotally. One told about a family she had served in her previous teacher of the deaf role for long time whose child used a cochlear implant. While on the educational audiology course, she began adjusting or enhancing her practice with the result that it ‘made all the difference in the world’ to the parents, the child, the school and the services. Because she enrolled on the course, she was able to use what she learned there to make such a difference.
The educational audiology course is undertaken part-time and comprises content, all of which include particular aspects of cochlear implant use and management, for a PG Dip as follows:
A key project is the reflective portfolio on 120 hours of work-based learning via clinic and school field experience. Students repeatedly commend the gold standard benefit for them in terms of meaningful learning, and building professional multi-disciplinary relationships.
Dissertation in the 3rd year completes the MSc. This is an original piece of qualitative and quantitative research work on a wide variety of topics. New knowledge for the profession is discovered or created as a result impacting practice locally and/or nationally or internationally.
For information about the scholarship and entry requirements please see https://www.maryhare.org.uk/professional-courses/postgraduate-courses
GLOBAL NEWS - American Cochlear Implant Alliance Focusing on Research, Advocacy and Awareness
(Photo: ACI Alliance on the Hill participants, CI2015)
CI2018 DC Emerging Issues Conference
The Listening Project, a new documentary by Irene Taylor Brodsky and Jane R. Madell, will premiere on Friday, March 9, 2018 during the ACI Alliance CI2018 DC Emerging Issues Symposium in Washington, DC. The Listening Project features interviews with twelve young adults who were born deaf and initially used hearing aids. They received cochlear implants later as CIs were not yet available for young children. They are successful in their personal lives and careers and the film showcases what is possible for children with hearing loss who have access to audition and good auditory-based therapy. A champagne reception and panel discussion with the filmmakers and four of the young adults featured in the film will follow conference sessions on Friday afternoon. This special event is free for conference attendees. To learn more:
Special Programs for Therapists and Educators will be highlighted during the CI2018 DC Emerging Issues Symposium. Parental Engagement in Pediatric CI Outcomes is a featured Emerging Issues topic. Sessions on Difficult Cases, Tools and Resources for Therapeutic and Educational Settings, and Adult Rehabilitation will be offered. Further details on these sessions may be found here.
ACI Alliance is pleased to announce that on Wednesday, October 18, 2017, the Early Hearing Detection and Intervention (EHDI) Act (S. 652) was signed into law by President Trump. The bill had earlier passed the U.S. House of Representatives and the U.S. Senate. The EHDI Act is bipartisan legislation that will help ensure continued funding and support for early detection, diagnosis, and treatment of hearing loss in newborns, infants, and young children. The full text of the legislation can be found here.
ACI Alliance strongly supported this legislation and worked closely with the bill’s champions in the House and in the Senate to advance the bill through Congress. ACI Alliance worked on language that was incorporated into the legislation emphasizing the importance of parents receiving accurate and comprehensive information about the hearing technology and communication options available to their child. The bill expands EHDI-related grants to include children younger than three, in addition to newborns and infants.
During the CI2018 Emerging Issues in Cochlear Implantation conference, 100 ACI Alliance members will meet with US Congressional Members and staff to familiarize them with the extraordinary benefits of cochlear implants as well as access concerns. The focus this year ACI Alliance on the Hill event will be on insurance and the continued availability of Medicaid for the entire continuum of CI care. A secondary issue may be the rollout of the Early Hearing Detection and Intervention Act.
ADVANCED BIONICS - Hearing with Two Ears - The Naída Family of Hearing Solutions
Hearing your best is important and you shouldn’t settle for anything less than a complete solution. This means that you want to keep both of your ears working together and contributing to your hearing experience. The Naída CI sound processor is the only cochlear implant system capable of communicating with another Naída CI, a hearing aid, or a CROS microphone worn on the other ear. With the right combination, you are sure to enjoy the sounds from both ears, no matter where you are on your hearing journey.
The latest addition to the Naída family of hearing solution is the Naída Link CROS. An industry first for cochlear implant users, this wireless audio transmitter provides full access to sounds for unilateral cochlear implant recipients with no hearing in their opposite ear.
Approximately 30%– 45% of cochlear implant recipients¹ are single-sided listeners who are at a significant disadvantage when positioned with their “hearing ear” away from the speaker, as might happen in cars or at meetings or group dinners. A second cochlear implant would be beneficial, but access may be limited due to medical indications or cost. The Naída Link CROS is a tiny, ear-level device that picks up signals presented to the “non-hearing” ear and instantaneously transmits them to the cochlear implant system on the “hearing ear.” A recent study demonstrated that the Naída Link CROS provided immediate improvement in speech understanding in quiet and noise and a better overall hearing experience².
The Naída CI sound processor can meet your personal hearing needs. If you have hearing in your other ear or even if you don’t, there is a Naída solution for you.3
ADVANCED BIONICS - Advanced Bionics International Professional Rehabilitation Workshop
In November, more than 50 experienced therapists from leading centres around the world gathered in Vienna for the 4th Advanced Bionics International Professional Rehabilitation Workshop. The meeting took place over three days and focused on the current best practices, evidence based (re)habilitation and future directions for paediatric and adult HA/CI (re)habilitation. More than 15 countries were represented, including many European countries, Brazil, Mexico, India and representatives from the Asia Pacific region.
Christine Rocca, Director of Mary Hare Music Therapy Unit in Berkshire, UK, shared with the group updates on musical (re)habilitative tools, including the BabyBeats™ early intervention resource, and discussed how music can be used with infants and toddlers to encourage listening and language development, by stimulating many areas of the brain very early on; as soon as they receive their hearing aids or while they are waiting for their cochlear implants. Maria Nicastri from the Policlinico Umberto I° CI centre in Rome, Italy shared insights on the development of a new musical rehabilitative training program for rehabilitation professionals who may not have had much previous experience in music therapy. Julie Hughes, CEO of the Elizabeth Foundation presented insights into family centred care and how musical rehabilitation tools can be adapted for use with children with complex needs, whilst Diana Harbor, Speech Therapist and Audiologist from The Ear Foundation in the UK, gave an insightful talk about social skill development in paediatrics and exciting new learnings in the Theory of Mind.
Other topics included new ideas for supporting teenagers with hearing loss, the growing field of e-rehAB and remote support, and adapting rehabilitative approaches to keep pace with the fast drive of technological change in the hearing industry. Advances in bimodal hearing were presented, focusing on the benefits of the new Naída™ Link hearing aid and Ilaria Patelli from the Ospedale Papa Giovanni XXIII CI Centre in Bergamo, Italy presented brand new bimodal research evidence on improved outcomes when using the Naida Link to watch the television.
Finally, discussion groups gave the opportunity for the participants to share ideas on research, training and adopting a family centred approach, whilst hands-on sessions increased the participants’ familiarity with the latest in AB cochlear implants, Phonak hearing aids and wireless technology.
COCHLEAR - Why I love Nucleus 7 and the Nucleus SmartApp
When Kate had the opportunity to try out Nucleus 7 as part of a pre-launch trial, she was sceptical. After all, how different could Nucleus 7 be from the Nucleus 6? Kate had been wearing a CI for eight years and, in 2017, she got her second implant. Each time she’s upgraded to a new sound processor, it has been a pleasant surprise. But Nucleus 7 totally knocked her socks off!
I began to lose my hearing when I was 11 and, by 21, my hearing was so poor that, even with hearing aids, I was struggling to keep a job. Despite professional advice and encouragement, I was too afraid of the surgery to get a cochlear implant. No matter what the professionals told me, I realise with hindsight that I just didn’t trust them enough. However, as I became more involved with the deaf community, I met a recipient who already had two cochlear implants. She told me her story, and encouraged me to go ahead and get an implant. “You won’t regret it,” she said. And I trusted her because she had been through the same as I had. Because of her, I had enough confidence to go ahead and get an implant.
So that is why I want to share my experience with other recipients about my cochlear implants. Because only someone with hearing loss can tell it like it really is.
Working for Cochlear means I often get to take part in clinical trials to test new devices and accessories before other people do. I was asked to test the Nucleus 7 not long after I changed to Nucleus 6, so I was already happy with my hearing. But clinical trials are a chance to help Cochlear colleagues understand things that they won’t ever experience for themselves, so I said yes.
First there were the speech perception in noise tests and my colleagues didn’t cut me any slack! Those tests are deliberately difficult, demanding and tiring. They were also the first indication that Nucleus 7 honestly gave me better hearing in noise than any of my previous Nucleus sound processors.
The first stumbling block for me was the iPhone because I’m a massive Android fan. “Nucleus 7 had better be worth it!” I told my colleagues as I connected Nucleus 7 to the iPhone to test it out. It was that simple – I connected my sound processor to the iPhone. No wires, no phone clip … just straight to the Nucleus 7. Then I made a phone call. It was mind blowing! I could hear so clearly, and it was unbelievably easy to use. I remember a time when I was excited about being able to use the phone at all. Now I talk on the phone all the time and I use FaceTime and What’s App for video calls, do all my conference calls, all streamed to my Nucleus 7.
When I started streaming music from the phone, I was hooked. The music is clear, and I can adjust and fine tune what I’m hearing with the SmartApp. And it’s seamless. I can be on the bus listening to a podcast or dancing around my kitchen with my music, when the phone rings. Whatever I’m listening to automatically quietens down as the ringer starts then, when the call is finished, my music comes back on automatically.
There’s another reason why I am so excited about the SmartApp. When I got my bilateral CI, I knew I would need to practice listening with my ‘new’ ear … but I hate not being able to hear with my good ear. When I’m streaming podcasts, audiobooks or the radio from the iPhone to my Nucleus 7, I use the SmartApp to turn the sound down on my good ear. So, whenever I’m listening to podcasts, I’m constantly training my hearing. This has been a game changer for me and it has made my rehab with the bilateral CI much easier and more enjoyable than it would have been previously.
Of course, I already used the phone and listened to music and podcasts with my old sound processors. But with Nucleus 7 it’s easier. I don’t need to carry the Mini Mic and Phone Clip, or chargers for them. I don’t need the Remote Control to adjust my sound processors. I do it all with my phone and the app.
It might seem over-dramatic to say that Nucleus 7 and the SmartApp have changed my life but, in the truest sense, they have. I use the phone and video calling more; I listen to music more often and more easily; I listen to podcasts every day and my hearing has improved as a result. And after years of “thinking about it” I took the plunge to go bilateral! Nucleus 7 has changed my life – it’s made life easier and better, and I feel like people finally think it’s cool to be deaf. And, since you’re wondering, yes, I kept the iPhone … because Nucleus 7 is worth it.
COCHLEAR - Find my Cochlear™ Nucleus® 7 with the Nucleus SmartApp
Anyone who ever lost a sound processor will remember the horrible feeling in the pit of their stomach as they tried to think of every possible place it might be. Thankfully, Cochlear™ Nucleus® 7 and the Nucleus SmartApp can reduce that stress and worry with the Find My Processor feature.
Find My Processor uses GPS and location services to log and display the location where the sound processor lost connection with the paired smartphone. Whether the sound processor is in the house, the car or the sports club changing room, Find My Processor narrows down the location to help find the missing Nucleus 7 and greatly increase the chances of finding it.
Find My Processor is just one way that Nucleus 7 and the Nucleus SmartApp make life easier. The SmartApp also allows the user to personalise and adjust sound processor settings and control audio streaming from Cochlear True Wireless devices. This is especially valuable for bilateral users, who can adjust each side to fine-tune their hearing for every environment.
COCHLEAR – Bimodal – the Smart Hearing Solution
Unsurprisingly, most people with hearing loss do not lose their hearing equally in both ears. For people with uneven hearing loss (what audiology professionals call ‘asymmetric hearing loss’) it’s important to find a solution that provides both ears with the best hearing possible. This article is based on a discussion between two leading specialists, who help explain why bimodal solutions are so important and what we should watch out for in the future.
The benefit of hearing with both ears is well-researched and documented. Aside from being able to understand speech better, improved spatial awareness and the ability to locate sound makes us safer in the world. When people hear bilaterally, we notice a positive difference in their speech and language development, no matter what age they are. People with uneven hearing loss – for example, those with progressive hearing loss or those who are only funded for a single implant – often have a useful level of natural hearing at the same time as they have hearing loss to a degree that makes it impossible to rely on hearing aids alone. That’s when it is most important to have access to both electrical and acoustic stimulation because one or the other alone will not give all that is needed and definitely not the most that a patient could enjoy.
When we speak to patients, their needs are clear. It’s not enough just to be aware of sound – the world requires connectivity. People want to clearly understand phone calls, to stream music and audio while they are with others. They want to use apps that have audio. Having audio input from their non-implanted ear is critical for complete immersion in the hearing world. What the Smart Hearing Alliance aims to do is to ensure those different technologies are truly integrated into a solution that allows people to make the most of both. In an ideal world, this isn’t going to feel like using two different types of solution; the experience should be a solution that is so seamless and cohesive that the user simply enjoys smooth, holistic hearing to the best quality that their hearing loss allows.
The Smart Hearing Alliance came about because both Cochlear and GN ReSound both recognise the importance of finding the best bimodal solution and they are both dominant in their respective markets. The technology and experience needed for hearing aids or implantable solutions is very different, but these companies have a strong cultural and technological match, as well as a similar ethos and approach to technology challenges. Both like to push the boundaries when it comes to advancement!
The opportunity to learn and understand from each other was by far the fastest way to give patients what they need. Bringing leading competencies together has allowed GN ReSound and Cochlear together to make rapid progress towards a fully integrated solution, with all the advantages for patients and clinicians. In 2014, for example, GN ReSound had already developed an app that allowed the user to adjust their hearing aid, to fine tune and optimise acoustic settings for the best sound experience. The solution was developed initially for people with hearing aids, but implant compatibility was an obvious next step. From the initial alignment to full integration, it was a question of understanding the importance of achieving good audio input in both the implanted and the non-implanted ears, taking that capability and aligning it to Cochlear’s implant platform.
The initial collaboration began in 2011, with the first outcomes being True Wireless accessories available in 2013. True Wireless accessories designed for full integration were an industry first. Using a remote microphone that can be located elsewhere, whether that’s clipped to the clothing of another person or linked to the TV, provides a better signal to noise ratio, so a cochlear implant or hearing aid wearer benefits in situations where there is background noise and it is particularly difficult to listen.
For bimodal users, it goes further than that. People using a bimodal solution can optimise the acoustic element of their hearing to complement what they are hearing with their cochlear implant. A hearing experience is very specific to the individual, so the acoustic-electrical solution needs to be precisely patient-centred. Allowing the user to fine tune their own hearing also has the benefit that they can optimise what they hear in real world situations rather than trying to simulate different environments in the clinic.
When the user is able to optimise the settings on the hearing aid to fine tune their hearing in a particular place, additional features come into play, such as geotagging. For example, if you regularly go to the same restaurant, you can optimise the settings on your hearing aid for that location then geotag it. That way, whenever you go to the restaurant again, the settings on your hearing aid will automatically adjust to your personally chosen settings.
There have been valuable deliverables from the Smart Hearing Alliance for professionals as well. In October 2017, a workshop led by Cochlear brought together experts in optimising hybrid and bimodal solutions – that’s more than 100 world experts working to understand the challenges, demonstrating and sharing their expertise. Such ‘behind the scenes’ work from the alliance pushes the whole industry closer to valuable results for patients.
Without doubt, bimodal solutions are the way forward for patients and the Smart Hearing Alliance aligns the scientific community network for the future, focused on improving patients’ experience. With a constantly changing future, it’s important to be constantly building knowledge and understanding of hearing loss at all levels.
From initiatives like this, it seems clear that we will see implanted devices being approved for things that are already possible and approved for hearing aids. Take the growth in telehealth solutions, for example. It is likely that, in future, people will access professionals for adjustment of their implanted solution remotely, something that is already approved in some parts of the world for hearing aids. People could have a professional optimise their device even if they are unable to reach a clinic or if they prefer not to do it themselves. Things like that are far from straightforward, but it will make a massive difference. People will be able to enjoy highly personalised hearing. It will be very exciting.
Bart Volckaerts is a Senior System Project Manager at Cochlear, a specialist in technology, product and process innovation. Dave Fabry is a Vice President for GN Hearing and ReSound and a highly experienced audiologist as well as specialist in hearing aid technology. Together they work with the Smart Hearing Alliance, where GN ReSound and Cochlear combine forces to develop bimodal innovations that benefit patients with asymmetric hearing loss.
MED-EL – Blend in or stand out: design covers for SONNET and RONDO 2 audio processors
At MED-EL we believe an audio processor should support recipients’ individuality and let them express themselves. Whether it’s the first day of kindergarten or just another day in the office, everyone should have the chance to show off their own unique style.
That’s why MED-EL created design covers for the DL-Coil for SONNET and RONDO 2 audio processor. From pirates and princesses to artistic designs and discreet natural patterns, MED-EL has an option for all types of users.
There are 24 design covers for the SONNET DL-Coil. These colourful design covers are not stickers – they’re printed right onto the cover for long-term durability.
All covers are available in both high and low profile: low profile for magnet strengths 1 to 3; high profile for magnet strengths 4 and 5. All of the design covers are locking, which ensures a secure cable connection. The inexpensive coil covers are all available individually – so users can mix and match to fit any style.
RONDO 2 is the first and only audio processor that has an integrated lithium-ion battery, which can be charged wirelessly. That means users can just set RONDO 2 on the charging pad at night and wake up to a full day of hearing.
The new audio processor offers users a sleek, modern look with a full range of stylish design covers. These covers can be changed in a snap – making it easy for RONDO 2 to blend in or stand out. There are 34 matte and glossy colours, hair patterns and artistic designs to choose from.
RONDO 2 also has a splash-proof design that’s protected against rain, sweat and other moisture. With the WaterWear accessory, recipients can swim in pools, lakes, oceans and more.
MED-EL – RONDO 2: The world’s first cochlear implant audio processor powered by wireless charging
In September 2017, MED-EL launched the world’s first cochlear implant single unit audio processor to feature wireless charging. Utilising a ground-breaking design, the RONDO 2 frees implant users from the need to regularly replace batteries, making the device easy to use and friendlier to the environment.
Powering up RONDO 2 couldn’t be easier. Users simply have to place it on the charging pad and it will charge automatically. After only four hours of charging, users get an exceptional 18 hours of battery life – in other words – a full day of hearing from one overnight charge. It also saves users from the hassle of replacing disposable batteries. In a single year, powering the device every day would require more than 700 batteries, with the new built-in battery users don’t have to purchase these, resulting in a saving of over £330.*
“We are so used to charging our devices at home overnight,” says Gregor Dittrich, Director of Product Management for MED-EL. “You charge your phone and tablet in this way, so why not your audio processor? It’s the next logical step for cochlear implants and we are so excited to be pioneering the way forward with RONDO 2.”
The RONDO 2 uniquely combines a transmitter coil, control unit and power source into a single device – a single unit processor – meaning it can be worn with glasses or hidden completely under hair.
For more information, and to register your interest, visit http://rondo2.medel.com.
*Based on a pack of six Zinc-air sized 675 batteries priced at £1.89
MED-EL – Ideas for Ears: Children worldwide win a trip to meet MED-EL’s leading hearing technology inventors in Austria
Winners created one-of-a-kind inventions as part of a global children’s competition to raise awareness about hearing loss
MED-EL has announced the winners of its global children inventor’s competition, Ideas for Ears. Children from six countries across the world will visit MED-EL’s headquarters next spring in Innsbruck, Austria.
The competition, which launched on Kid Inventors’ Day in January 2017, challenged children from across the world to create a piece of artwork showcasing their invention to improve the quality of life of people living with hearing loss. Whilst celebrating children’s creativity, Ideas for Ears aimed to improve children’s understanding of the challenges associated with hearing loss and deafness as well as the benefits of treatment.
“As a company born from inventors, MED-EL’s story is proof of the power of a good idea and the impact that inventions can have on the lives of people living with a condition like hearing loss and deafness,” said Geoffrey Ball, inventor of the VIBRANT SOUNDBRIDGE. “The one-of-a-kind inventions proposed by the children are impressive and we look forward to meeting the winners in Innsbruck in 2018.”
Competition entries came in the form of drawings, videos and beautifully designed presentations, all aiming to improve the lives of people with hearing loss. Inventions included cinema glasses with subtitles, a Global Positioning System (GPS) device to locate lost audio processors and glasses that turn conversations into readable text.
During the winners’ trip, the children along with their guardian will be capturing and sharing their journey on social media using the hashtag #ideas4ears.