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EURO-CIU Newsletter. March 2018

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March 2018

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EURO-CIU
European Association of Cochlear Implant Users
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President's Message

Various images about Cochlear Implant Day

This past month we have celebrated #HearingAwarenessWeek that started on 25th February with the #CochlearImplantDay and ended with #WorldHearingDay.  Our slogan for #CIDay18 "NoLimits" has broken all barriers and frontiers.  The International Cochlear Implant Day is celebrated now in more than 60 places in the world.  Cochlear Implant companies (check their videos and images!), users, families, professionals, hospitals, etc. all united to raise awareness on #HearingLoss.  I want to congratulate you all for celebrating another Hearing Year.  Because as our dancer #CochlearImplant protagonist this year, Simone Botha, says: “Life isn’t perfect.  No one is perfect.”  But we have #"NoLimits" and we are preparing to #HearTheFuture.

See you soon in Barcelona Workshop #EUROCIU18 !

Teresa Amat (President)


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Message from the Editor

Photo - Brian Archbold

Many thanks for all your contributions - as always, 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.

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.

The next edition will be due in June, so please let me have your articles and jpg photos by Monday 4 June 2018.  Just e-mail them to me at This email address is being protected from spambots. You need JavaScript enabled to view it.

I look forward to seeing many of you in Barcelona in April for the EURO-CIU Workshop and General Assembly!  Please see reminder about this below, if you haven't already registered.

Brian Archbold (Editor)


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EURO-CIU Workshop and General Assembly

Banner EURO-CIU 2018

Just a reminder to EURO-CIU members that our annual General Assembly and a Workshop will be held in the lovely city of Barcelona on Friday 6 April and Saturday 7 April.  For information about these two days, please click on http://eurociu.org/barcelona2018/index.php/en/welcome/ .

You can then click on the Registration tab to book your place at these events, meals and hotel.  Also, please check the other tabs for information about the Workshop Programme etc.


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EURO-CIU – Refreshing image and communication plan

Photograph of the EURO-CIU Board

Photo: EURO-CIU Board taken from the new website - Ervin Bonecz (2nd Vice President), Beatrice Cusmai (Secretary), Teresa Amat (President), Sari V Hirvonen-Skarbö (1st Vice President) and Henri-François Baiverlin (Treasurer)

Readers must have been surprised to see the refreshed logo of the EURO-CIU on the call for articles e-mail.  This is the first step of the communication plan of our association, followed by a new website, Facebook, Annual Report and other elements.  We are proud that the image refreshing made by a cochlear implant user graphic designer from Hungary, Krisztina Kovács, and managed by Ervin Bonecz EURO-CIU’s 2nd vice-president and Beatrice Cusmai EURO-CIU’s secretary.

The new website is already available on www.eurociu.eu, and provides news and articles, information about co-operations and campaigns, registration for the forthcoming event, subscription to the Newsletters, etc.  The old website is no longer updated, but we will keep it temporary for archive.

More details of the communication plan and activities will be presented at the General Assembly in Barcelona on 7 April.

Ervin Bonecz


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International Cochlear Implant Day

Happy Cochlear Implant Day photo

We hope that you all did something to promote International Cochlear Implant Day on 25 February.  There were a lot of postings on Twitter - Did you follow them with the #CochlearImplantDay hashtag on @eurociu twitter ?

​Please see the articles under The Netherlands and Spain, describing their actions on International Cochlear Implant Day.


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“Cochlear Implant: No Limits” slogan for 2018 International Cochlear Implant Day

Simone Botha dancing

Simone Botha, a cochlear implant user since she was 22 months old, is a professional dancer who was chosen to advertise a brand of gyms around the world.  Several months ago, the gym advertising agency edited her cochlear implant, showing society still has a lot to learn about being inclusive and eliminate stigmas.

She posted the photo to her Facebook page and wrote to Virgin: “This is a billboard picture of me posing for Virgin Active and if you don’t know me personally then you won’t miss the tiny piece that is a cochlear implant that is supposed to sit on my head.  They just went and without my permission decided to edit the cochlear implant out, because why!!???  It doesn’t fit with their pretty little picture of portraying the perfect life that is Virgin Active?  Well guess what?  Life isn’t perfect. No one is perfect.”

Virgin Active swiftly removed the edited photograph and had a meeting with the model: “We issued an immediate apology to Simone.  We will work with Simone around education and have re-run the campaign, un-retouched.  We 100% accept that the action of photo-shopping the image is not in line with our values as a business, nor in keeping with the welcome we extend to everyone.”

During our International Cochlear Implant Day 2018 celebration we want to share this story to raise awareness as Simone says, “Thanks to the Cochlear Implant, there are no limits!”. Her profession related with music is a clear proof of that.

www.eurociu.eu

@eurociu

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8th European Friendship Week (EFW) 2018

Photo of last year's EFW group

Sunday July 22nd – Saturday July 28th 2018

8th European Friendship Week (EFW) 2018

The Ear Foundation in association with The European Association of Cochlear Implant Users is delighted to be sending you information about this summer’s 8th European Residential Event in the UK for teenagers with cochlear implants.

Teresa Amat, EURO-CIU President:
I am really happy to see the evolution of the Cochlear Implant Teens during the European Friendship Week.  It is my firm belief, EFW is helpful and more than just a “summer camp”.  It is an experience that changes our teens lives, showing them cultures beyond their countries and realities, but at the same time it allows them, thanks to this new technology age, to have friends from all over Europe that last for years.  EFW helps to empower and mature our youth.

I would like to ask all of you to spread the message to encourage new participants, new countries, new leaders (adult cochlear implant users, professionals, speech therapists, family etc) to become involved in this amazing adventure.

Mel Gregory, The Ear Foundation, CEO:
At The Ear Foundation we are proud to be seeing so many teenagers with cochlear implants benefiting from attending the European Friendship Week over the last 7 years.  I have personally visited the event and seen how it transforms lives and gives them a strong and positive self-identity having a sense of being part of a larger European community valuing its diversity and similarities.  The stories the teenagers tell are truly wonderful and inspiring about making lifelong friendships, growing in confidence, feeling really good about themselves and developing leadership skills.

Please look at the 2017 EFW film the teenagers and leaders made last year.  You are welcome to put this on your own country websites or transfer this film to your own YouTube accounts so that it can be subtitled into other languages.  If your country attended EFW 2017 and you would like some film clips of your own leaders or young people inserted, please contact The Ear Foundation with these film clips and we can create a specific film for your country including these.

https://www.youtube.com/watch?v=lEhOrugHZuM

We welcome country delegations from all members of EURO-CIU.  Teams of teenagers come together in groups of 4-6 led by 1 or 2 country leaders.  Once they arrive they experience a 6-day event which focusses upon learning, sharing and lots of fun.  A social learning curriculum is covered through a combination of group discussions and focussed sessions which are embedded into a busy timetable of activities both on and off site.  These include sport, arts (e.g. dance / craft / music) and British trips out.

The week is designed to be full and active with opportunities for the teenagers to practise the many skills which are needed to fulfil their potential.  If you would like further information about the 2018 event, please contact This email address is being protected from spambots. You need JavaScript enabled to view it. or telephone +44 115 942 1985.  If you have any questions about leading a group, please contact This email address is being protected from spambots. You need JavaScript enabled to view it. who will be delighted to answer your questions as overall leader of the week.

Clare Allen
Specialist Speech and Language Therapist
The Ear Foundation


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Spend2Save: one year on!

Photo - launch of latest translation in Romania

Photo - launch of latest translation in Romania

Largely thanks to EURO-CIU Board and members, over the past year the campaign #Spend2Save, led by The Ear Foundation, has gained momentum, now being in eleven languages.  We now have English, Swedish, Spanish, Dutch, Turkish, German, Italian, Hungarian, French, Romanian and Danish.  Thanks to the Romanian group for doing the last translation to be added: and there is room for more!  You will find them on The Ear Foundation and EURO-CIU websites: www.earfoundation.org.uk and on: www.eurociu.eu.  Huge thanks to all who have done this, and we have set them out with the same style and message: if we manage hearing loss well, we save society money – and change lives.  This ensures a consistent policy message across Europe which is in line with the WHO resolution.

More importantly, we thank all who have used the documents to engage with governments, ministers, public policy makers and funders.  Countries where action has been taken using the Spend2Save resources include Spain, Germany, Sweden, Netherlands, Belgium, Turkey, Denmark, Hungary and Romania.  For example, Leo De Raeve reports:

  • “I started up a “working group” on Spend2Save in Belgium to focus on the “spend to save” campaign within Belgium.  We have had a meeting with the Belgian Minister of Health Care + 3 Flemish EP’s with the goal of hearing screening in the 50+ group, and now there is a Ministry of Health Care working group on new selection criteria for CI”

Ann Charlotte Gyllenram (Barnplantorna) reported from Sweden:

  • ”Spend to Save summary has been launched in Sweden with press release and to the hospital boards to highlight the cost effectiveness.  We succeeded in accomplishing extra funding in one of the largest regions (second largest after Stockholm); that is Västra Götaland (including Göteborg).”

Teresa Amat in Spain reports:

  • “We met with IMERSO, the old-age government organisation and the health minister.  The goal was adult screening and hearing loss to be included in government documents.  There was lots of interest but no budget.”

Reinhard Zille reports from Germany:

  • that Spend to Save has been used to initiate a campaign with the new government in Germany especially in Bavaria with the Disability Officer, and that they are fighting for a “Payment for Participation” for hard of hearing and deaf people.

This is a common story: lots of interest where meetings have been held, but too often little or no budget.  Where the translation was done by several organisations working together, as in The Netherlands, this has led to some joint working for Spend2Save, which is always more powerful.  Major organisations such as IFOS are keen to work with us and we have used opportunities already in 2018 to share the documentation, with more planned.  On World Hearing Day, Sue Archbold was to speak at the World Health Organisation in Geneva about government policy work across Europe, including Spend2Save: unfortunately, the weather was the worst for years and Geneva airport was closed.  One of the few to manage to get there were Teresa Amat and Laia Zamora representing EURO-CIU.  So, the opportunity was missed to share this work at WHO, but we will make sure there will be another.  With the report of WHO and the implementation of their resolution being vital, Spend2Save is very timely and we now have a network of active people and organisations across Europe – and global interest.  As one of our partners said: “Policy changes only ever occur over long periods of time, and typically from a bottom up initiative.”

Have a look at the Summary of Spend2Save – there is a link to a pdf from the EURO-CIU website – see http://eurociu.eu/spend2save and the full report with various Adult CI Strategy Reports can be downloaded from http://www.earfoundation.org.uk/research/adult-strategy-reports/europe-spend2save-2016.

Many thanks to Cochlear for supporting this initiative.

“WHO and this (Spend2Save) combined together is really important and we have a great opportunity”.

If your language is not one of the eleven already translated and if you would like to make a translation in your country, please e-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Dr Sue Archbold (Consultant to The Ear Foundation)


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Hearing Day 3rd March

Photos from Hearing Day at WHO in Geneva

The celebration of this 2018 was held in Geneva with the presence of the Deputy Director General for Programs (DDP) of the WHO, Dr. Soumya Swaminathan, who opened the conferences on March 2, stressing the need to consider hearing as a goal priority and hearing loss as a global pandemic, such as the resolution that the WHO first adopted last June on hearing loss.  She also stressed currently 6% of the world is estimated to have severe and / or profound hearing loss.  Deafness impacts your health in other ways.  Currently, according to her, governments have no excuse not to work on this issue, whether with early detection, noise prevention, at work, prevention of ototoxic drugs, etc. to prevent more people with hearing loss in the future.  And, on the other hand, we must not forget to work with people who are already deaf, either with giving the possibility of devices such as hearing aids, cochlear implants or other hearing implants, as well as working on rehabilitation.

Dr. Otorrino Shelly Chadha, Technical Officer of Prevention of Deafness and Hearing Loss, Blindness, Disability and Rehabilitation (WHO) stated: "People believe that hearing health is a problem in developing countries and it is not true.  We have an aging population because life expectancy is increasing and many older people, also the "rich" countries, do not have money to pay for hearing aids and / or cochlear implants.  Because they are older, conformism is the norm, but we should not be accepting this reality.  The role of the WHO is to influence public health strategies to ensure we improve this point to include it in all national public health systems worldwide, improving the visibility and knowledge of hearing loss and its impact so that all world, also the elderly, have access."

The event was closed by Dr. Alarcos Cieza, coordinator of disability and rehabilitation at WHO, which afterwards Teresa Amat, our president, had an interview.  Dr. Alarcos warned: "The projections for 2050 show that up to 900 million people will have a hearing disability; 1 person in 10 will have a disabling hearing loss.  Even though by then, technology will not be today’s, we will have advanced a lot and maybe it will be possible to solve it with research such as stem cells.  But some kind of rehabilitation will always be necessary.  We cannot think that we put in a device and it's over.  Rehabilitation is often the most important part of the process, because without it, you do not get the full benefit of the investment you have made to alleviate deafness."

WHO committed to working with EURO-CIU to advance the global agenda in terms of auditory rehabilitation and increase awareness about hearing loss.


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Lunch Debate European Parliament Brussels: “Hear The Future….and prepare for it”

Speakers in the European Parliament and a poster

On Tuesday 6 March, 3 days after World Hearing Day, there was a lunch debate in the European Parliament in Brussels on the topic “Hear the future…and prepare for it”.  Hosts were the German member of the European Parliament (EP) Renate Sommer and her Austrian colleague Heinz Becker.  The meeting was supported by the European Association of Hearing Aid Professionals, the European Hearing Instrument Manufacturers Association, Age Platform Europe, the European Federation of Hard of Hearing and EURO-CIU (represented by Leo De Raeve, our scientific advisor).

They had invited excellent speakers to present on several topics related to ‘the growing population of people with a hearing loss in Europe (doubled by 2050) and the demand for actions on hearing care’:

  • Lidia Best (EFHOH): Earlier EP debates
  • Mark Laureyns (AEA): Hearing and Cognition
  • Bridget Shield (Brunel University-London): the cost of untreated hearing loss
  • Shelly Chadha (WHO): Hear the future
  • Hélène Amieva (INSERM-Bordeaux): hearing care to keep you independent
  • Anne-Sophie Parent (AGE platform Europe): Why independence is high on the agenda

The most important actions coming out of this meeting are:

  • Prevent hearing loss by organising a ‘make listening safe’ campaign;
  • Promote awareness on hearing loss by the introduction of quality hearing screening programmes for new-borns, children and adults to ensure early intervention; by supporting public awareness on hearing loss and tinnitus and by informing policy makers and stakeholders on the prevalence of hearing loss and the impact of hearing care;
  • Stimulate intervention and professional hearing care by supporting training for qualified professionals all over Europe and to strive to ensure interference free access to standardised wireless communication;
  • To invest in research on hearing loss: its prevention, rehabilitation and to share relevant studies and statistics.

The meeting was closed by a quote of Mahatma Gandhi: “The future depends on what we do today!” So, let’s come to action…

Dr Leo De Raeve


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ACT! Seminar Accessibility Communication Today!

On February 20, EURO-CIU, the European cochlear implant users association, organized together with members of the Deafness Platform, the hearing impaired and the deafblind, an event to promote and fight for more accessibility to communication in all products and services.  The seminar called ACT! (Accessibility Communication Today!) took place at the headquarters in Brussels of Microsoft, a company that is currently working on making its products more accessible as it is very sensitive to issues of disability and deafness in particular, having one of its directors, deaf herself; and having created a position within the company that is dedicated to promoting accessibility inside and outside the company, called accessibility evangelist.

The European Platform for Deafness, Deaf and Hard of Hearing, in which EURO-CIU, together with Microsoft, managed to unite all stakeholders from the field of communication and information technologies, the disabled movement and the European institutions , with members of the European Parliament and the European Commission, so that together we could discuss the accessible technology, the opportunities and challenges that face us in the future, as well as the legislative progress in this area.  Several speakers were present: Emmanuelle Grange, the director of Disability and Inclusion of the European Commission; Helga Stevens, Member of the European Parliament and Jenny Lay-Flurrie, Director of Accessibility at Microsoft, as well as Immaculate Placencia Porrero, of the Social Affairs, Disability and Inclusion Unit of the European Commission, and followed by Alejandro Moledo, in charge of new technologies and innovation of the European Disability Forum.

Hector Minto, Microsoft's accessibility spokesperson, ended by telling us about the latest accessibility developments in his company, which can be used by all consumers, whether they have a disability or not, for their convenience, with the idea that they are not creating for them; disabled or for the non-disabled, but they are creating products for everyone, whether from different continents, as if they have different capacities.

Representatives of the Platform spoke of the barriers that we encounter on a daily basis and summarized our requests as a group to a simple concept that we hope all companies that present a product to the market will understand.  Apart from disabled people, we are consumers.


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WHO calls for action from governments and their partners to stem the rise in hearing loss

Some 900 million people could suffer from disabling hearing loss by 2050, according to new estimates released by the World Health Organization on the occasion of World Hearing Day on 3 March.

Currently 466 million people worldwide suffer from disabling hearing loss, 34 million of whom are children. This is up from 360 million people five years ago.

The main reasons for this increase is a growing ageing population and the persistence of risks such as ear and vaccine-preventable infections like measles, mumps and rubella; the use of medicines that can harm hearing such as those used to treat drug-resistant tuberculosis and malaria; and exposure to loud sounds through personal audio devices and in entertainment venues and workplaces.

"Past trends and future projections predict a vast increase in the number of people with hearing loss," says Dr Etienne Krug, Director of the WHO Department for Management of Noncommunicable Diseases, Disability, Violence and Injury Prevention. "Unless appropriate action is initiated, nearly one in 10 people could have disabling hearing loss by 2050. This will considerably affect their lives and pose a significant cost to health systems. Governments must act now to prevent this rise and ensure people with hearing loss can access the services and technologies they need."

Disabling hearing loss affects people in many ways. It impacts on a person's ability to communicate, socialize, learn, work and enjoy life, contributing to poverty, social isolation and feelings of loneliness. In older people in particular, hearing loss is linked to cognitive decline, increasing the risk of depression and dementia. Unaddressed hearing loss costs countries an estimated US$ 750 billion annually in direct health costs and loss of productivity.

Interventions can reduce hearing loss and its adverse impacts

Overall it is suggested that half of all cases of hearing loss can be prevented; in children, this figure is around 60%. This includes by immunizing children against infectious diseases; screening and treating children who suffer from chronic ear infections; promoting safe childbirth to minimize the risk of asphyxia and neonatal infections associated with hearing loss; avoiding the use of particular drugs harmful to hearing; controlling exposure to loud sounds in occupational and recreational settings; and raising awareness about healthy ear care practices through public health campaigns.

Detecting and intervening early when people do have hearing loss helps to minimize the consequences, especially for children. This is achieved through screening programmes. In cases where hearing loss is unavoidable, it is vital to ensure access to appropriate and affordable assistive technologies such as hearing aids and surgically implanted electronic cochlear implants, and communication services like speech therapy, sign language and captioning.

Governments and partners have a key role to play

To stem the rise in disabling hearing loss, WHO supports governments and their partners to:

  • Integrate ear and hearing care into primary health care systems as part of universal health coverage;
  • Raise awareness among the public about the prevention of hearing loss;
  • Ensure services to treat hearing loss, including access to assistive technologies and communication services;
  • Train hearing care professionals;
  • Regulate sound exposure on personal audio devices and in entertainment venues and workplaces;  
  • Empower people with hearing loss to overcome stigma and discrimination.

WHO has also initiated development of a global report and related toolkit on hearing, to provide authoritative evidence on the magnitude of hearing loss globally, as well as its prevention, treatment and rehabilitation.

RELATED LINKS

World Hearing Day 2018 materials
http://www.who.int/deafness/world-hearing-day/whd-2018/en/

WHO fact sheet on deafness and hearing loss
http://www.who.int/mediacentre/factsheets/fs300/en/

Etienne Krug, MD, MPH
Shelly Chadha 
MBBS, MS, PhD

World Health Organization


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International Symposium on Usher Syndrome

Photo of Mainz with Usher 2018 banner

INTERNATIONAL SYMPOSIUM ON USHER SYNDROME
USH2018: JULY 19-21, 2018 IN MAINZ, GERMANY

Call for abstracts, call for posters and registration to the 4th International Usher Syndrome Scientific Symposium and the 10th International Usher Syndrome Patient Symposium are open now.

As an academic and researcher or young investigator in the field of Usher Syndrome, hereditary retinal dystrophies, inherited deafness (syndromic), genetics or molecular biology, you are invited to:

  • Share and Showcase your work as a poster presenter or as a speaker
  • Network and connect with the world’s leading experts form relevant fields of research (diagnostics, genetics, therapy,…)
  • Exchange ideas and knowledge among scientists, clinicians and geneticists
  • Discover important breakthroughs in Usher research
  • Get insights in therapeutic strategies and treatments for Usher Syndrome in or close to clinical trials
  • Facilitate Usher Research

As an individual with Usher Syndrome, a family member or patient representative you are invited to:

  • Get the latest information on genetics and mechanisms of Usher Syndrome
  • Discover important breakthroughs in Usher research
  • Understand the therapy options and learn about clinical trails in the pipeline
  • Network with clinicians, scientists and researchers
  • Connect with Usher families and organisations
  • Feel part of the Usher Community

Early bird registration: March 31, 2018
Abstract submission deadline: April 30, 2018
Registration deadline: May 15, 2018

For more conference details see www.ush2018.org

Distribution of this announcement to interested academics and researchers or young investigators on national and international level and to ear, eye and genetic professionals and patients or patient representatives and advocates is highly welcome.


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AUSTRIA - Application with Handicap

Photo: At the Panel discussion at the event in Lower Austria - Mag. Günther Widy, Sozialministeriumsservice Lower Austria; BR Kommerzialrat Sonja Zwatzl, Wirtschaftskammer Lower Austria; Dr. Ernst Wurz, HR-manager at ‚Pollmann International‘; Lucas Gruber, AMS Lower Austria

Photo: At the Panel discussion at the event in Lower Austria - Mag. Günther Widy, Sozialministeriumsservice Lower Austria; BR Kommerzialrat Sonja Zwatzl, Wirtschaftskammer Lower Austria; Dr. Ernst Wurz, HR-manager at ‚Pollmann International‘; Lucas Gruber, AMS Lower Austria
© Sozialministeriumservice/CM Creative

For people with disabilities it might be difficult to find a suitable job: employers fear how to provide barrier-free working conditions.  In Austria, there are additional restrictions for the employer to quickly terminate the employment relationship with disabled employees in case of problems.  This additionally scares off some employers.

In Austria, the ‘Sozialministeriumservice’, an Austrian governmental service for people with disabilities, and the Austrian economic chamber jointly organized a series of events where potential employers were informed and their misgivings were taken.  ‘Sozialministriumservice’ is the first drop-in centre for people with disabilities in regard to social and working aspects.  The economic chamber is the employers´ representative body.  Scattered throughout the year 2017, together they offered information events for entrepreneurs in each state of Austria.

Employees with Handicap - Situation in Austria

According to the economic chamber, Austria is among the European leaders relating to the employment of persons with disabilities.  Nevertheless, there are still too many disabled people looking for a job.  A special ‘Disability Persons Employment Act’ is intended to change the situation: companies, offering jobs must give applicants with disabilities or chronic illnesses the same chance as to applicants without disabilities.  For every 25 employees, companies have to employ at least one person with a handicap of 50 percent or more – this includes deaf and Cochlear-implanted persons.  The employment of this employee is financially supported by the government.  If the requested quantity of people with disabilities will not be reached, the companies have to make compensation payments.

The information-events featured counselling services and possibilities for financial support for companies wishing to hire disabled employees.

Hints for those affected

“In the Employment Service, we see that people effected by fatalities tend to focus on their impairments“, says Lucas Gruber from AMS.  The Public Employment Service AMS, short for ‘Arbeitsmarktservice‘, is a governmental agency linking job opportunities.  “We try to focus on what skills they bring with them – and they bring a lot“.  The chances in a job interview would increase rapidly when changing the focus on their strengths.

In Austria, quite a number of AMS services support new entry or re-entry of disabled people to working life or their transition in the profession.  Further support is available for young people with disabilities, who want to learn a specific profession.

“Companies, who avoid handicapped persons as employees, miss a lot of potential in working power“, quotes Dr. Ernst Wurz from the Austrian Newspaper ‘Der Standard‘.  Wurz is HR-manager at ‘Pollmann International‘, an Austrian industrial company with around 600 employees.  “Which company can nowadays afford, to disclaim potential?  The job market needs people who are willing and able to work – this includes people with disabilities.“


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AUSTRIA - Employees with Disabilities – experienced Employers

Photo: Induction loop at the delicatessen counter in the BILLA prototype branch

Photo: Induction loop at the delicatessen counter in the BILLA prototype branch © BILLA/Dusek

In 2017 the Sozialministeriumservice, an Austrian governmental service for people with disabilities, and the employers´ representative body of Austria, the Austrian economic chamber, organized a series of events.  Within the scope of these events the economic chamber presented companies that act exemplary in the employment of disabled or chronically ill employees.  Their experiences shall encourage further potential employers to spread diversity in working environment.

The REWE Group is one of the companies that were introduced.  The published disability strategy from 2015 points out that customers and employees with disabilities and health restrictions shall benefit equally: In the eleventh district of Vienna the prototype of a barrier-free BILLA offers, among other assistance services, an inductive hearing loop for customers using hearing aids or Cochlear Implants at the delicatessen counter and at the cash desk.  The REWE Group attaches importance to have employees with disabilities also in leading positions.

The management of Karl Mertl Handelsgesellschaft look back on 57 years of experience in employing people with disabilities.  Currently two are working in senior positions.  Even if it could be necessary sometimes to look for a more proper position for a special employee, Mag. Marie Gruscher, granddaughter of the founder Karl Mertl, commented: "Acting socially is a value in itself!"

"Of course, you have to make parents aware that adolescents with disabilities also need certain endurance for vocational training," Dr. Ernst Wurz addresses to the parents of disabled young people.  Wurz is Human Resource Manager at 'Pollmann International', an Austrian industrial company.  He emboldens affected people: "People who are capable, even though limited, but also willing to perform, will find a suitable position on the job market."


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DENMARK – Placing Auditory Verbal Therapy for children with hearing loss on the political agenda

Photo: Decibel Chairman, Stella Dyrberg; and an AVT session

Photo: Decibel Chairman, Stella Dyrberg; and an AVT session

In 2013, Decibel (The National Association of Children and Adolescents with Hearing Loss) launched a research study, investigating whether 3 years of Auditory Verbal Therapy (AVT) (1)  would result in development of age equivalent language and listening skills among 55 hearing impaired children.  The results of the study, which were published in Cochlear Implants International in 2017 (2), showed that more than 80% of the children achieved age equivalent language levels.

Based on the study results, as well as advocacy efforts by Decibel, the Danish Government decided to fund, with approximately € 3,6 million, a 4-year period, offering 3 years of AVT intervention to children aged 0-5 years with bilateral hearing loss with a PTA above 40dB, at three Audiology Clinics specialized in AVT.  Throughout the 4 years, Decibel will be responsible for documenting the implementation and monitoring the quality of the AVT intervention program, as well as regularly communicate updates to relevant stakeholders.

Starting September 1st, 2017 ultimo 2020, all children meeting the inclusion criteria are referred to their local AVT center at their regional university hospital.  Here, the families take part in individual AVT sessions with trained AV therapists, who are either in the process of or have completed 3 years of AVT training and mentoring.  The frequency and content of the AVT sessions are fitted individually and are based on the child’s development and needs.

With 10 Audiology Clinics involved, and an estimation of more than 500 participating children and families, it is by far the largest Danish initiative investigating how nationwide AVT intervention can be implemented in a Danish hospital setting.  This is done by monitoring and documenting the children’s auditory and verbal development, and by ensuring a high level of quality in the intervention towards parents and families.

‘’I am very proud of what we at Decibel achieved with the AVT intervention. It is a result of parents and professionals working closely together, contributing with new knowledge. Moreover, we also succeeded in qualifying the AVT intervention for children and adolescents with hearing loss and placing our children’s needs on the political agenda’’ Stella Dyrberg, Chairman of Decibel.

To document the effects of the AVT intervention, the children are tested annually using the LittlEARS Questionnaire and Peabody Picture Vocabulary Test 4.  It is expected, that 80 % of the children will achieve age equivalent test scores.  To ensure quality in the AVT intervention program, all AV therapists must, on a yearly basis, earn Continuing Education Units (CEU’s).  Decibel will be responsible for arranging a yearly conference, where CEU’s can be earned.  Moreover, Decibel will collect questionnaires about experiences with the intervention program from parents and AV therapists.  All data are captured by the online based Electronic Data Capture system (EDC) RedCap.

Hopefully, the results of the AVT intervention will lead to an extension of the initiative for children with hearing loss.  It will also ensure, that children with hearing loss receives AVT intervention by qualified AV therapists, thereby improving the quality of AVT intervention in Denmark.

If you have similar projects in your respectable countries, we would be grateful if you could share your experiences with us.

If you have any questions, please contact Tanja Pihl Sandager (Project manager), This email address is being protected from spambots. You need JavaScript enabled to view it. or Maria Hallstrøm (Documentation officer), This email address is being protected from spambots. You need JavaScript enabled to view it. .

(1) AVT is an educational practice developed by AG Bell Academy USA.  The practice is targeted children with hearing loss (HL) regardless of degree of HL and type of hearing device.  Through play-based therapy sessions, teaching the parents Auditory Verbal techniques and strategies, AVT aims at stimulating auditory brain development and listening and spoken language skills.  For more information see https://www.avuk.org/what-is-auditory-verbal-therapy

(2) Percy-Smith L, Tønning LT, Josvassen JL, Mikkelsen JH, Nissen L, Dieleman E, Hallstrøm M, Cayé-Thomasen P. Auditory verbal habilitation is associated with improved outcome for children with cochlear implant. Cochlear Implants International 19 (2017) 1:38-45


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GERMANY - Deaf born children & regular schools

Photo: Reinhard Zille

Photo: Reinhard Zille

Reinhard Zille used EURO-CIU’s Google Group to introduce a survey about deaf-born children and regular schools.  Every member will have received an e-mail from Reinhard, and these are the responses that he received.  For each country where a response was received, Reinhard has summarised the facts.  It makes interesting reading.

Sweden

According to Swedish law, everyone resident in Sweden has a duty to attend school.  This means that, since 1972, primary school nine years is compulsory for all children.  From the fall of the year the child turns seven to the age of sixteen, the child must go to school.  Since 1997, there is also the opportunity for all six-year-olds to start school, even though this is voluntary.  The Swedish Parliament has decided that the pre-school class will be mandatory from the autumn term 2018.

Children who attend a regular primary school are not entitled to sign language interpreters.  So, the children who need education in sign language go to a special need schools.  It is not a fact of whether the children have a Cochlear Implant or not but if they are able to take part in spoken language education.  In the special need schools, we have deaf children with or without CI and also children who use hearing aids.

There are five special schools in Sweden for deaf and hearing-impaired children, and children with Cochlear Implants.  In upper secondary school you have the right to use a sign language interpreter at school, which gives more choices since deaf students can choose any school.  There are some schools that offer education in sign language at this level also.

Czech

We have a project on the inclusion of hearing impaired children into the mainstream schools in the Czech Republic.  We are working on a methodology for teachers.

Deaf children even without a CI or hearing aid can attend mainstream schools here and would get an interpreter.  But we don’t know any child like this, not even the president of the association ASNEP (which is an association for deaf people in the CZ).  The main problem would be their communication with the other children in the class and making friends.

Luxembourg

In Luxembourg, deaf children without CI can only attend special school, as there is no (not yet) adequate care for them in regular school.  As Luxembourg signed up for the UN convention on the rights of disabled persons only a few years ago, we hope this situation will change in the years to come.  Together with other actors in the sector of disabilities, we continue working on a model of real inclusion.  Next year, Luxembourg will accept German Sign language as an official language and it might then become possible to include deaf children in regular school.  Keep on hoping and fighting.

Slovakia

We have chain schools for deaf children, but if parents wish for their deaf children to attend regular schools, we have integration system and it is for discussion with the school management if they are able to meet and arrange integration conditions and program for the child (professional capacity, special needs of the child etc.)

Finland

In Finland attending to the basic education from 6-7 to 14-15 years age is mandatory to all (compulsory education).  In last decades the scholar system has been going from integration towards inclusion.  There are still a few territorial special schools for children who have several difficulties to learn, but if you are "otherwise normal" and even your mother tongue is sign language, you should get an interpreter in your home town school and attend in a smaller group or even in normal class in nearest school == inclusion.

Finnish National Board of Education made in year 2014 a report: "Sign language users in basic education". It is available in Finnish: http://www.oph.fi/download/176947_viittomakieliset_oppilaat_perusopetuksessa.pdf

According to that report the sign language users will get mother tongue study modules under subject: "Sign language and literature" or "Finnish/Swedish for sign language users".  Which one is selected, depends on the pupil's background.  Does (s)he have home which uses sign language beside with spoken language or is (s)he using only sign language and what are her/his abilities to work in Finnish/Swedish.  If there is an aim to continue studying in higher grades it is useful, if student has good written language skills.

In Finland children who have any kind of severe handicap are usually attending school one year earlier (at age 5-6 instead of normal 6-7) - so they will get proper basic skills in preschool before the go to the elementary school.  This is called lengthened compulsory education.  This decision restricts maximum size of this kind to student to 20 pupils.  Normally there are about 25 pupils in lower grades and max. 32 pupils in higher grades in a classroom.

Spain

In Spain usually the kids with cochlear implants and hard of hearing go to ordinary school unless they struggle with the curriculum.  When they go to ordinary school they have at least weekly visits by a speech therapist.  In some places, the speech therapist works at the school because there is more than one deaf person in the school because they have proved they are successful with them.

But it is a parent’s decision, there is no a law or regulation about it.  The parents are lead in one direction or another, depending of who is informing them, but they have the final say.

There are special schools the kids can go to, if the parents prefer it.  In there, apart from having speech therapist, they teach sign language as well.

Most CI kids today go to ordinary school and most have some struggles and problems during secondary school, during their teens, but usually the speech therapists and sometimes some curriculum (normal) teacher to reinforce them, helps them to pass without problems.

Some special schools are awful, and not let the kids grow properly educationally speaking having really poor results and others are amazing, teaching techniques to study and reinforce the basic material and after a couple of years, they can go to or return an ordinary school again.

Belgium

In Belgium there is a new ‘inclusion’ law since September 2016, saying that all children with disabilities should have the possibility to go to regular education. (also Deaf children)

Deaf children can only go to special education if they receive a certificate for that from an external independent committee.

In daily practise we see now that all hard of hearing children start immediately at age 3 in regular schools.  Deaf children and hearing-impaired children with additional problems start for 70% in special schools (they can receive a temporally certificate) and some of them move to regular schools a few years later.  Only deaf children with severe additional needs stay in special schools for the deaf.

All children with a hearing loss in regular schools receive 1 to 4 h/week support from a teacher of the deaf or speech and language therapist.  Additionally, they can ask for all school hours a sign language interpreter or a speech to text interpreter.

United Kingdom

In the UK that is certainly not the case.  The intention is to find the school that best suits the needs of the individual deaf child which those days would usually be a mainstream school with a varying amount of support.

Belgium

In the French speaking part of Belgium, the intention is exactly the same, find the best mainstream school that suits the needs of the individual deaf child.

And, depending of the school, the parents and the teachers’ will + the help of the pedagogical supports of the APEDAF they would receive a varying amount of support.

If this doesn’t succeed, the child will be directed to a special school but generally temporarily in order to go back as quick as possible to a mainstream school once his problem(s) is (are) solved.

The will is really ‘’as much inclusion as possible’’.

I think it’s the same in the Dutch speaking part.

Hungary

In Hungary each institution (kindergarten, elementary school, high school) has a specific document that enlists all of the actions and activities regarding SEN children regardless they are integrating or segregating institutions.  If this document states that the institution undertakes the development of hearing impaired and/or deaf children (meaning they provide surdopedagogists), then the child may attend it.

So, in Hungary it is not the matter of CIs, but children's education depends on this document. This is "controlled"/overlooked by a special committee, where I work.  The committee's job is to examine these children in both pedagogical and psychological ways, and then decide whether they will be enlisted in an integrating institution or segregating institution.  The surdopedagogist examines their vocabulary, understanding of the language, command of language, general knowledge, etc.  The psychologist takes IQ tests, attention tests, and so on to determine the mental skills of the child.  And after then, the team will decide what kind of institution would be best.

For example: we have a 4-year-old child, attending kindergarten.  She attends a kindergarten, where the document's SEN children are: speech disorder, mentally disabled, and no hearing impaired.  She speaks very well with her CIs (she had it for 3 years now [let's assume that]), she needs to stay integrated.  So, we would try and find another kindergarten for her, based on a database.  If the parents want to stick to the kindergarten they have been attending, there are options also, but that unfortunately depends on the bureaucracy (let's not get into that for now).

But if the child has had her CIs for 3 years, her language skills are not developing at all for some reason regardless of the developments she's been receiving, we would sooner or later recommend segregating institution.

Same is true if the children are using hearing aids.

It is a very unique, and rather unlikely case if a child or student attends school and speaks only sign language.  In those cases, they have a sign language interpreter with them during school hours.  The finance of that could be private or by an association.

Germany

Situation in Germany depends on the federal state you live.  Deaf children even without a CI or HA can attend mainstream schools (inclusion schools) in Germany (Bavaria) and would get an interpreter.  On the other side, there are a lot of special schools for impaired pupils.  They have the right to change from one school type to the other on their demand.  Even though Germany has signed up for the UN convention on the rights of disabled persons, they decided to keep these special schools for 10 more years.


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HUNGARY – 'Opera of the Nature'

Photo: Lake Tisza

Photo: Lake Tisza

The 'Opera of the Nature' is a major classical music event, which will be held within frameworks of a four-day festival on 26-27-28-29 July 2018.  The goal is to connect the quality culture with the healthy lifestyle as well as to familiarize the wonderful natural endowments, birds' world and fauna of the Lake Tisza with the domestic and international audience.  Lake Tisza is one of the greatest natural place in Hungary with amazing and unique nature.

The first day, called 'Lake Picnic', is a real family program with music, lots of fun for children of various ages, and the biggest attraction is the family cooking with Gianni Annoni, Italian chef and restaurant owner.

The second day, called 'Tour D'Opera’ is a one-day bicycle program, a 67-kilometre bicycle tour along the Lake Tisza with 11 stops.  At the 11 stops riders will be entertained by more than 80 artists and can enjoy refreshments.

The third day called 'Boat D'Opera' is a unique boat tour on the lake.  Similarly to that of the bicycle tour, there will be the possibility for listening to mini-concerts at special scenes recalling the world of Tisza shipmen, which places will be approached by boats with 8 to 10 persons.

The fourth, closing day offers various programs and it is time to say good-bye to the venue and make a decision to return next summer.

MACIE will build up a big info tent where visitors of the festival can attend and hear various professional presentations about the hearing lost, hearing aids, campaigns like Spend2Save, and of course about the cochlear implantation.  It is a unique possibility to use the music as a communication channel, and as a tool to illustrate what does the hearing loss mean.

Hungarian Cochlear Implant Association and the Festival organizers welcome CI users and families from Europe.  If you need further information please contact: This email address is being protected from spambots. You need JavaScript enabled to view it. or visit http://operaofthenature.com/en/


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THE NETHERLANDS - Cochlear Implant Day 2018 in the Netherlands

The OPCI Stand

On February 28 the University Medical Centre Utrecht organised, just like last year, a symposium to celebrate Cochlear Implant Day.  Prof. Stokroos, head of the ENT department at this hospital welcomed everybody and told something about CI in general and more specifically about the situation at Utrecht.

Drs. Elke de Vocht, audiologist of the University Maastricht did research on bimodal and binaural hearing with CI and normal hearing aids.  This study is very important because there are many CI users who also have hearing aids.  Because a second CI is not reimbursed in the Netherlands for adults at this moment, this is for many CI users the best alternative, and for some of them it may be a better alternative instead of a second CI.

Mrs. Joke Veltman, a classical piano player, became deaf some years ago and is now a CI -user.  She shared her story of learning how to recognize music and how she learned to play piano again.  For many CI users the combination of CI and music is difficult.  Joke Veltman told about the way you can learn to appreciate music again by training yourself.

Dr. Versnel, researcher at Utrecht University, gave a summary of the study about the degeneration of the auditory nerve.  In a study with guinea pigs, they found a way to make the auditory nerve become stronger again after deafness.

Mrs. Dr. Straatman, ENT doctor at Utrecht, is also researcher in stem cell therapy.  The research focuses on growing again, of regenerating, the hair cells in the cochlea.  Despite some hopeful results, it will probably take more than 20 years before it is possible to make this applicable for human beings.  So maybe our children or grandchildren can profit from this.

Mr. Drs. J van Heteren, also a researcher at Utrecht University, is involved in a study about single sided deafness.  Patients with single sided deafness will be treated with a cross hearing aid, a bone conducted device or a CI.  As the patients have one normal functioning ear left, this gives the researchers the opportunity to compare the sound of a CI with normal sound.  In the near future they hope that they will be able to use this information to improve setting up the CI- processors resulting in better hearing with CI.

Finally, Mrs. Saskia Boer presented her book “Mam hoort weer” (Mom hears again).  In two fictional diaries she describes the process to get a CI from the point of view of the adolescent daughter and her mother, who is hard of hearing and is getting a CI.  The book shows what hard of hearing means for a person and also what a CI can do.  Also, you can find some basic information about hard of hearing, hearing aids, the process to a CI.

Of course, OPCI was present during this day with flyers and an information stand.  It is always nice to see that people want to know more about what OPCI is doing.  They are interested in our national contact days, the campaign against the waiting lists and the living room meetings.  Next to informing about our activities, it is pleasant to see and talk to people you have met during earlier activities of OPCI.


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THE NETHERLANDS - OPCI starts a campaign to eliminate the waiting lists at CI centres

OPCI logo

Since 2016 patients, being candidate for a CI, have to wait for at least one year and at some CI-centres even 2 years before they receive their Cochlear Implants.  The reason for the growing waiting lists is that more and more people recognize the value of CI and are aware CI is a possible solution when normal hearing aids are insufficient.  CI companies organize information meetings about CI, accompanied by CI users.  Our organization (OPCI) facilitates living room meetings (see March 2017 newsletter of EURO-CIU).  Our CI-centres have less opportunities for future patients.  That’s why the total number of implantations in The Netherlands stagnates.

The challenge:

First of all, we contacted the Health Care Insurance Companies.  They replied: It is the policy of the Academic Medical Centres to solve this problem.  The next logical step was an assessment at the specific CI centres, step by step regarding the process of implantation.  This data was sent to the boards of the Academic Medical Centres.  On behalf of all the Academic centres one Centre (Radboud MC, Nijmegen) contacted us.  In cooperation with them we wrote a letter, a statement.  Of course, we mentioned the report of The Ear Foundation “Spend to Save” and the report of the World Health Organisation.

In December 2017 we sent the letter to all the boards of the Academic Medical Centres, all political parties, the Ministry of Health, all the Health Insurance Companies and two main advisory boards in the area of the health policy.

In this campaign, all the Academic Medical Centres gave us their support.  We have appointments with two political parties and probably there will be more.  Next to this we had an initial conversation with one of the advisory boards (Nederlandse Zorgautoriteit).  The Ministry of Health has confirmed there is a serious problem and they will see what the advisory board can do and will keep an eye on the problem.

It will take quite a long time before the problem of the waiting lists will be solved, but we think we have established a few very important first steps in the process to eliminate waiting lists.  We hope to inform you next time about the results.


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ROMANIA - “How to Build a Non-Governmental Organization” - practical ideas, experiences

Photo - delegates at conference with Sue & Brian Archbold

Photo - delegates at conference with Sue & Brian Archbold

Post-conference message

On the initiative of Perspective Association for Hearing Impaired Children from Romania, between 13th and 14th of January 2018, in Vulcan, Brașov County, took place the first edition of the national conference with international participation of associations that provide support for hearing impaired people in Romania.  The topic was "How to Build a Non-Governmental Organisation – practical ideas, experiences”.

Based on the needs and the problems encountered in the associations’ establishment and management, the event aimed to support the participant associations through specific themes such us: the legislation and its recent changes, accounting for associations, the methodology and the types of existing European financing programs and grants that can be accessed by the associations and also a meeting with two representatives of the most famous European foundation, The Ear Foundation (Nottingham).  Sue and Brian Archbold presented details about the Foundation's historic route, starting from how the idea of the necessity of setting it up emerged in the minds of the small group of founders which had at its disposal only a room for their work, until the current concerns, challenges and European dimension of the organisation.

"If one association only exists and stands still, it will have no results," said Brian Archbold and the "hard work, cooperation with other organisations and fairness at work may be significant prerequisites for solid progress and imposing real changes at all levels," added Sue Archbold.  These ideas are part of the criteria that guide the work of our Association, too.  So, naturally emerged the intention to organise this conference once per year from now on in order to ensure better cooperation and cohesion between organizations with the same goals in Romania and in the Republic of Moldavia.  This common agreement and decisions can give us extra power to promote our ideas in the benefit of hearing impaired people before the competent authorities of the State and beyond.

Last but not least, the Conference offered the opportunity of better knowledge between existing organisations and to create a common action plan.  Thus, the following were taken into account:

  • to improve and facilitate communication between associations;
  • to analyse by working with a specialist of the effency and effectiveness of the establishment of a Federation of our associations (idea envisaged by the Association Asculta Viata in the past);
  • the maintenance and development of good cooperation between our organisations on the line of financing projects and applying for grants;
  • the launch of the invitation to participate with articles for the second number of our magazine called” Perspective”.
  • the filling of a joint letter regarding the implementation of the neonatal auditory screening programme and tracking the change of methodology governing the change of the cochlear implants’ external part older than seven years.

Perspective Association for Hearing Impaired Children from Romania is thanking to:
„Asculta viata” Association, „Audiosofia” Association, „Darul Sunetului” Association, „Halloka” Association, „Darul Auzului” Association, „Koala” Association, „Aghora” Foundation, „Sa auzim glasul mamei” Association, „Aud si vorbesc” Association from Republic of Moldavia for their participation, ideas and their open-mindedness.

Warm thanks to Sue and Brian Archbold from The Ear Foundation for showing us their “perspectives”!

Special thanks to S.C.  Fix Import Export S.R.L., Cochlear distributor in Romania for sponsoring the event!

Contact:

www.asociatiaperspective.ro

This email address is being protected from spambots. You need JavaScript enabled to view it.

Authors: Theodor Sirbuletu, Gal Katalin


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ROMANIA – Hear Life - group of children and young people with the leaders

Association of hearing impaired persons „Hear Life!” was established in 2007 at the initiative of the parents of hearing impaired children at a time where information about cochlear implants and the rehabilitation process was scarce and the national CI programme had been blocked for roughly two years.

In this context, our mission has been to provide support, legal advice, relevant information on CI and the rehabilitation process, counselling, advocacy and lobbying, as well as direct material and logistic help to families affected by serious or severe hearing losses, in order to maximize the chances of social integration of the children with cochlear implants.

To this end, our association has been organizing family events (summer & winter camps), workshops and seminars for professionals and parents and we have our magazine, website and Facebook (Asociatia “Asculta Viata!”- Hear Life!).

Since 2012 we started our involvement as partners in projects focused on drama-therapy activities, which took place during our camps and then as initiator of various projects funded either by private grants or by state, through which we managed to develop an accredited training course for speech-therapists, organizing workshops and seminars for more than 100 professionals and parents, creation of our own speech therapy office, two early intervention centres in partnerships with schools for the deaf from Iasi and Vicovu de Sus.

Last but not least, we managed to create a pottery workshop and offer specific activities for more than 180 deaf or hard of hearing children, from the school for the deaf in Iasi.

As, in Romania, neonatal screening is not implemented yet, we implemented two projects aimed at raising awareness on this issue and managed to test more than 1,200 children from kindergartens.

Since 2015, our association has been organizing summer camps for children and teenagers with CI, focused on horse-assisted therapy and last year we participated for the first time at the European Friendship Week.

In regard to the national legislation, we have implemented various lobbying and advocacy campaigns targeted at improving the relevant legal provisions, disseminating information about the legal rights and providing legal advice to the parents of hearing impaired children.

Information received from similar associations from abroad including EURO-CIU members, concerning their national CI programme, proved invaluable, as we finally managed to convince the Ministry of Health and the National Health Insurance on the importance and benefits for having the sound processors replaced within the National CI programme.  The bill modifying the legal framework should come into force in the first half of 2018.

Summarizing, we have gone a long way and a there’s more to come, but the joy of seeing our children having overcome their disability is both motivating and rewarding us.


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ROMANIA - Counselling

Photo - front cover of booklet

Twenty years ago, when I started studying special education I got in contact with special needs terminology and only later I met some of the special needs persons.  Seven years ago, I started helping hearing disabled children.  Then I realised that in our country there was a need for counselling their parents and teachers, so I started working on a guide for these categories.

My booklet tried to explain the way ears and hearing function, the hearing disability degrees, the way you can regain hearing through prosthetics and cochlear implants and how you can help the child to learn language.

I am working in a Speech Therapy Local Center in Tg Mures Romania and on the 25th of February 2018 on the International Cochlear Implant Day I published on the behalf of our centre this guide, to raise awareness of the benefits of cochlear implants.  It can be accessed totally for free, hoping this would help lots of children gain hearing and develop verbal communication.

https://view.publitas.com/cjrae-mures/copilul-hipoacuzic-rosca-bianca/

Bianca Rosca SLP Md

CJRAE MURES Romania


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SPAIN - Cochlear Implant Day Celebrations in Spain

Photos of the Cochlear Implant Day celebrations in Spain

Several events have been held in Spain to celebrate the "International Cochlear Implant Day", many of them related to the AICE Federation and its Delegated Associations. Other entities also organized acts, talks, conferences and playful proposals. The media echoed the "Day" and we had a presence in the written press, radio and television.

Federation events started in Valencia with conferences, an illumination of an orange monument by the cochlear implant with the collaboration of the City Council of the town of Requena; in Aragon cochlear implant users and their families went on a trip to the castle of Mequinenza; in Catalonia a leisure visit to the “Spanish Town” ended with several speakers’ lectures and a typical Catalan "calçotada" meal.  Meanwhile in Castilla y León there was a joint conference with speech therapists and in Castilla-La Mancha there was a charity gala with a painting exhibition from a cochlear implant user; and in Cantabria there were conferences in the library of the municipality and a fellowship meal.

In all events, Simona Botha story was highlighted and our "slogan" NoLimits was the “theme” of the day. The Federation launched a Manifesto to be read by cochlear implant users defending their rights. More info: www.implantecoclear.org


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UK - NCIUA and NICE in the UK

NICE logo

Cochlear implantation in the UK is state-funded and delivered through 19 NHS implant centres.  The candidacy criteria are laid down by NICE and the key elements of the current guidelines, established in 2009, are unilaterals for adults and bilaterals for children.

The threshold hearing level is greater than 90 dB measured at two frequencies of 2 kHz and 4 kHz.  Candidature assessment is also measured by BKB sentence perception which is set at less than 50% in quiet.

These criteria are the most demanding of any country in the world and, whilst they set a uniform standard for implantation in the UK, they continue to be a barrier to large scale cochlear implantation.  Implant numbers continue to grow in the UK and the annual rate for adults is now 899 (2017).  When one considers that the population of severely / profoundly deaf adults in the UK is several hundred thousand, the achievement levels in the UK leave a lot to be desired.

Three years ago, an Action Group was formed in an attempt to get NICE to lower their criteria.  Comprising senior researchers in the field, the British Cochlear Implant Group of NHS professionals, The Ear Foundation and amongst others the NCIUA, this group, led by Sue Archbold and Brian Lamb, produced a series of reports and scoured research across the world in order to present a formidable case for NICE to reconsider its criteria.  Group members Debi Vickers and Padraig Kitterick conducted an in-depth candidacy survey across all NHS CI centre staff.  Debates were held at Westminster and Ministers were responsive to the facts presented.  All the reports and research studies were sent in to NICE and this pressure was successful in that in the spring of 2018 NICE agreed to remove its guidelines from their static list and consider their possible revision.  In December 2017 NICE issued a consultation phase inviting stakeholders, including the NCIUA, to submit evidence.

A very comprehensive submission was compiled by the Action Group (and independently by all the relevant stakeholders) and this was submitted on 23 January 2018 when the consultation closed.  The key elements for adults of that submission are a threshold hearing level of 80dB or greater measured at 2 or more frequencies of 500Hz, 1 kHz, 2 kHz, 3kHz and 4kHz without acoustic hearing aids.  The BKB test procedure is recommended to be replaced by the AB word test with a required phoneme score of 50% or greater.

Initially it was expected that NICE’s deliberations would lead to the issue of a statement in January 2019, but it has since been learned that due to the very wide-ranging revisions submitted by the Action Group, NICE is now entering into a far more broader view review, the Scope and timescale of which is not yet known.  There’s no doubt, however, that the impact of the Action Group’s submissions has made a huge impression on NICE and a positive outcome should result.  So, it’s a case of watch this space!!

Richard Byrnes
NCIUA


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GLOBAL NEWS - American Cochlear Implant Alliance Focusing on Research, Advocacy and Awareness

Photo of film being made

In March, ACI Alliance organized our annual clinical research conference, CI2018 DC Emerging Issues in Cochlear Implantation.  The conference provided opportunities for CI surgeons, audiologists, speech pathologists and other clinicians; scientists; educators; students; and government representatives to share information.  Topics included cochlear candidacy changes, parent role in child outcomes, quality of life, practice management and other key emerging trends.  Over 800 attendees from the US and around the world came together for presentations, posters, and discussions.

Another element of the symposium was the world premiere of The Listening Project, a documentary film by Irene Taylor Brodsky and Jane R. Madell.  The Listening Project features interviews with young adults who were born deaf and initially used hearing aids as CIs were not yet available for young children.  Most received cochlear implants later.  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.  "The Listening Project shows that nothing is impossible for deaf kids," Madell said.  "Thanks to years of determination and hard work -- and with an assist from some innovative technology -- these young adults have built lives and careers the world may not have thought were possible for them."

To view the movie trailer visit: https://www.acialliance.org/page/TheListeningProject
The film will be available for purchase after the premiere.  Watch our website (www.acialliance.org) for further details.

ACI Alliance was delighted to welcome Congressman David McKinley of West Virginia’s First District as the Opening Guest Speaker.  Congressman McKinley is the only Member of Congress who uses a cochlear implant.  He serves as Co-Chair of the Congressional Hearing Health Caucus and is an active proponent of appropriate hearing healthcare.

Just prior to the start of the conference, nearly 70 ACI Alliance members met with US elected officials and staff to familiarize them with cochlear implants as well as access concerns.  The focus this year’s ACI Alliance on the Hill was on maintenance of cochlear implant coverage under Medicaid, retention of Essential Health Benefits in health care, and access to CI via the Veterans Health Administration (VA).

Speaker materials for the meeting will be available on the ACI Alliance website in several months and a proceedings document is planned.  Check https://www.acialliance.org/page/CI2018 for information.


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ADVANCED BIONICS - Advanced Bionics HiResolution™ Cochlear Implant Technology

Man playing the piano

AB cochlear implants deliver the proven benefits of clearer speech and a broader range of sound.

This means “Access to Speech and Music” – Advanced Bionics recipients are able to hear a broader range of sound, from the softest to the very loudest, without having to change any settings.  This means that, as an AB recipient, you have access to speech and music.

What does this mean to you?  Better Speech Comprehension and Music Enjoyment – The HiRes technology allows for access to finer qualities of speech like frequency (pitch) and time, enabling better speech understanding and music enjoyment 1,2,3.  As an adult AB CI recipient you will have the best opportunity to reconnect with the hearing world; your child, as an AB CI recipient, can have access to the best speech and language development possible with the added benefit of technology that will meet their growing needs 4,5,6.

Do you want to know how?  Click here and learn more about AB technology and how it surpasses the competition in all areas

  1. Firszt JB, Koch DB, Downing M, Litvak L. (2007) Current steering creates additional pitch percepts in adult cochlear implant recipients. Otology and Neurotology, 28(5):629-636.
  2. Koch DB, Osberger MJ, Segel P, Kessler DK. (2004) HiResolution and conventional sound processing in the HiResolution Bionic Ear: using appropriate outcome measures to assess speech-recognition ability. Audiology and Neurotology, 9:214-223.
  3. Spahr A, Dorman MF, Loiselle LH. 2007. Performance of Patients Using Different Cochlear Implant Systems: Effects of Input Dynamic Range. Ear and Hearing. 28:260-275.
  4. Levitin D (2007) - This is your brain on music, the science of a human obsession
  5. Moira Y (2002). Tone. (Cambridge Textbooks in Linguistics), Cambridge: Cambridge University Press.
  6. Hirst D, Di Cristo A (1998). A survey of intonation systems. In: D. Hirst, A. Di Cristo (Eds.).  Intonation Systems, a Survey of Twenty Languages. Cambridge University Press Cambridge (1998)

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COCHLEAR - Cochlear Family. Always on. Always empowered. For Cochlear recipients

Cochlear Family image

Whether you’ve just been implanted or you started your hearing journey years ago, you’re entitled to all the benefits that come from being a member of a unique community.  It's a global community and it's growing every day.

Be amongst the first to hear about new products and services that will help make your life easier.  Get the latest information, tips, techniques and expert advice to help you make the most of your Cochlear products.  Receive news from Cochlear, and connect with other Family members.  Learn about local promotions and events in your area.

Enjoy the peace of mind that comes from knowing that we're with you every step of the way.  Membership of Cochlear Family is free with no obligations.

In collaboration with your healthcare professionals, Cochlear is dedicated to helping improve your hearing journey.

For more information, please visit Cochlear Family


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COCHLEAR - COCHLEAR – Kanso has the power of TWO

Photo of two children with skateboard

Cochlear™ Nucleus® Kanso® is the world’s only off-the-ear cochlear implant sound processor with two microphones.

In a recent market research study, users of Kanso testified to their high level of satisfaction, particularly with Kanso’s smartness, simplicity and discreetness.

Kanso is smart so its users can be too.
The Kanso Sound Processor is the only off-the-ear cochlear implant sound processor with proven technology that connects users to their world with more confidence.

Having two microphones, the Nucleus Kanso Sound Processor provides significantly better performance – delivering better speech recognition in noisy environments compared to standard directional and single microphone processing. In a recent clinical study, recipients experienced a 68%-point improvement (1) when using dual, instead of single microphones.

Kanso has true wireless connectivity
The Nucleus Kanso Sound Processor is simply compatible with Cochlear’s True Wireless™ Devices.  With no need for neckloops or extra wiring, this technology helps users easily enjoy clearer sound with less interference (2).  With the Cochlear Wireless Phone Clip, you can stay connected to family and friends, streaming calls and music from a wide range of Bluetooth® devices.

Kanso is discreet
As the world’s smallest and lightest off-the-ear cochlear implant sound processor (3), Nucleus Kanso is designed to fit snugly and securely against the head.  Seven different magnet strengths allow users to balance retention and comfort.

Kanso is compatible with Cochlear Nucleus Profile, CI24RE and CI24 cochlear implants.

  1. Mauger SJ, Warren CD, Knight MR, Goorevich M, Nel E. Clinical Evaluation of the Nucleus 6 Cochlear Implant System: Performance Improvements with SmartSound iQ.  Int J Audiol. 2014. Aug;53(8). [Sponsored by Cochlear].
  2. Jones M. Use of Cochlear™ Wireless Accessories with Nucleus® 6 Sound Processors. 2015. CLTD 5546. Internal clinical trial data. [Sponsored by Cochlear].
  3. Cochlear Limited. D1190805. CP1000 Processor Size Comparison. 2017, Mar; Data on file.

 


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COCHLEAR - Hearing (and seeing!) with a Cochlear Implant

Photo - Bernhard Fasser

Photo - Bernhard Fasser

For Bernhard Fasser, hearing is exceptionally important because he is also blind.  Nonetheless, he lives independently and enjoys life with the help of a Cochlear Implant and, with Made for iPhone technology, his new Nucleus 7 Sound Processor has made a world of difference.

Having been able to both see and hear as a child and a young man, going blind was difficult for Bernhard Fasser.  To then lose his hearing as well was far worse because he relied on his hearing to compensate for his lost sight.  He found out about cochlear implants through online research, using the PC’s speech function.  Although sceptical at first, trust in his doctor gave him the confidence to go ahead and he received his CI in 2010.

Mr Fasser says, “I think it’s fair to say that my CI is what lets me live independently.  I can really only live alone because I can hear.”

The Nucleus 7 difference

Being able to hear makes Mr Fasser feel less isolated.  With Nucleus 7’s Made for iPhone technology, he is able to have on-screen content read to him, so he can check transport timetables or refer to his calendar and that gives him a level of independence that he wouldn’t otherwise have.

“When I need to go somewhere,” he says, “it’s easy to check train times or to buy tickets using my phone.”

Mr Fasser has always loved reading, following the news, listening to music, doing research and learning new things.  Without his sight, he relies on his hearing for all those things.  As a blind person, he listens to spoken audio much faster than someone with normal hearing.  He uses the Apple Voice Over feature at a speed that most people would find impossible to follow.  “I probably read about 100 books every year – it’s great fun and good practice for my listening skills.  I doubt whether a sighted person could keep up with me!”

He uses the iPhone’s Siri and Voice Over functions to operate the Cochlear SmartApp and a wireless Mini Mic, to help in noisy places, such as restaurants, or in the car where the driver is talking over engine noise or with the radio on.  For both of these, streaming directly from the iPhone makes sound quality better, so Mr Fasser can listen at a higher speed as well as in places where there is background noise.

Direct streaming also provides an element of additional privacy.  “If I want to check my diary, I can do it without the person next to me hearing. I can keep track of time in church or at a concert without other people being aware that I’m checking my watch.  These are all things that people with normal sight and hearing do without thinking.”

Feeling connected

Lots of CI users talk about how their CI connects them to the hearing world and Nucleus 7 means they have the same connectivity as normal hearing people because they can talk on the phone, stream music and listen to podcasts.  For Mr Fasser, the difference is even greater because he doesn’t connect with the world through sight.  Hearing, being able to read a book, to use a computer, to go out for a walk, to spend time with friends, to stay aware of the news … all these things are made possible with a CI.  And they are all made better and easier with Nucleus 7.

This short video shows how Nucleus 7 makes independent life easier for Bernhard Fasser. Watch it here.


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MED-EL - Explore Life – There’s more to hear

Image of a selection of articles in "Explore Life" on-line magazine

Unlock your own sensory world with www.explore-life.com – the new platform with a focus on hearing

Explore Life (www.explore-life.com) is more than just an exciting new online magazine – it’s a platform available to all those with an interest in hearing, providing an opportunity to become part of a new network.  Members can immerse themselves in videos, articles and interviews on a wide variety of interesting and diverse topics.  Through the free membership, members are not only able to interact with others via the Explore Life network, but also benefit from exclusive interaction possibilities.

Once signed up, members can create their individualised ‘collections’ and add articles and other content of interest – allowing users to save their favoured elements in one place.  Articles cover a myriad of subjects to suit all interests including health, innovation, work, kids, music, fitness and many more.  By following authors plus their and other members’ collections, new areas of interest can be discovered!  The Explore Life notification system means that members will always be kept up to date and informed when new content is available from preferred authors or topics.  There is also the option to share articles across all forms of social media as well as within the Explore Life network through ‘recommending’ them to other members.

“Explore Life offers high-quality content and opens up a world of interaction where members can really become part of a community made up of like-minded individuals,” commented Patrick D‘Haese, Corporate Director of Awareness and Public Affairs, MED-EL.

Explore Life builds upon more than 40 years of know-how in hearing, providing members with a truly supportive resource and community – thanks to the support from MED-EL, a leading manufacturer of hearing solutions that help to overcome hearing loss as a barrier to communication.

Sign up to Explore Life (www.explore-life.com) and immerse into the exciting world of your own senses.


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MED-EL launches a new tablet-based planning tool, OTOPLAN, revolutionising otological surgery

Image of the OTOPLAN tablet

New otological planning tool allows surgeons to generate individual 3D reconstructions of patients’ unique anatomy and assists with optimal choice of MED-EL electrode for each candidate


MED-EL Medical Electronics and CAScination, specialists in surgical navigation solutions and medical robots, have announced the launch of revolutionary surgical planning software, OTOPLAN.

OTOPLAN is a cutting edge surgical planning tool that enables otologic surgeons to map their patients’ exact anatomy, before they even make their first incision.  Using computerised tomography (CT) scans, the tablet-based tool generates tailored 3D models allowing superior operation planning and precision versus existing technology.

MED-EL CEO Dr Ingeborg Hochmair said, “OTOPLAN is the result of several years of collaboration with CAScination to develop the next generation of surgery planning tools.  Giving surgeons the ability to map, in clear 3D, each one of their patients’ cases allows them to make key surgical decisions to plan the best possible outcome like never before.”

OTOPLAN provides surgeons with exceptional information for enhanced surgical planning and decision making.  In the case of cochlear implant surgery, OTOPLAN enables surgeons to visualise the optimal cochlear implant electrode array from MED-EL’s comprehensive electrode portfolio for each individual patient.

“Everyone’s anatomy is unique including the shape and size of one’s cochlea.  OTOPLAN enables surgeons to visualise the optimal cochlear implant electrode array for each individual patient.  This kind of technology has the potential to revolutionise cochlear implant surgery and provide patients with a personalised approach,” said Professor Paul van de Heyning, Chairman and Professor at the Department for Otorhinolaryngology and Head and Neck Surgery at Antwerp University Hospital, Belgium.

OTOPLAN is approved for countries accepting the CE-Mark.

For more information on availability, visit www.otoplan.ch


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MED-EL - Road to Alone: World Hearing Day campaign highlights the life-changing impact of hearing loss

Cartoon images from the film

To mark World Hearing Day (3 March 2018), MED-EL has launched a new global campaign to raise awareness of the significant impact that hearing loss can have on people’s lives.  Called Road to Alone, the campaign film follows one woman’s journey through hearing loss as she gradually becomes disconnected from the world around her.  It then contrasts this with the bright future she sees after receiving treatment.  It is hoped this will encourage people who think they may recognise symptoms of hearing loss to seek further advice from a medical professional.

Hearing loss affects over five per cent of the world’s population with 360 million people currently living with disabling hearing loss worldwide.  In addition, many more are not even aware of the symptoms and so remain undiagnosed.  On average, people in the UK wait 10 years between identifying symptoms and taking steps to address their hearing loss.

This year’s theme for World Hearing Day is ‘Hear the Future and Be Prepared for It’, which draws attention towards the anticipated increase in the number of people with hearing loss globally and the preventive strategies, including hearing implants, that are required to stem the rise.

Patrick D‘Haese, Corporate Director of Awareness and Public Affairs at MED-EL commented, “Over the last four decades MED-EL has had the privilege of seeing how our hearing implants have enhanced the lives of people with hearing loss in so many ways, enabling them to reconnect with the hearing world around them.  More needs to be done however, particularly to improve global access to and awareness of the full range of hearing solutions available to people living with hearing loss.  MED-EL is proud to support the World Health Organization’s efforts with a film that truly captures the life-changing impact of hearing loss and profound benefits of early identification followed by appropriate diagnosis and treatment.”

Visit www.roadtoalone.com for information on MED-EL’s contribution to addressing hearing loss globally.


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