Young deaf people with CI meet up in London to share advocacy stories

The Malala Foundation and Cochlear Foundation brought together five young people with CI from across the globe to London to  share their advocacy stories and inspire each other to further action. These young people represented 163 others who had responded to Achieve Anything programme and are examples of the first group of young deaf people growing up with CI. They were inspired by meeting Malala herself and Shelly Chadha of WHO who dialled in from Geneva provided further inspiration. 

Leo De Raeve, Chair of CIICA: This group of inspiring young deaf people demonstrates what can be achieved with early intervention, education, and the right, cost-effective, support.

Mahrukh Zaidi, a young doctor from India:  This early detection and subsequent support I received helped me thrive at school, providing the opportunity to study medicine.

Qais Khan then led discussion to begin a CIICA consultation about what these young people need to secure their future to be independent and succeed. More to come!

Back

CONSULTATION ON THE LIVING GUIDELINES: OPEN UNTIL 31 MAY

Your opportunity to comment!

CIICA  welcomes the consultation on the Living Guidelines; they will provide welcome international standards on the provision of hearing care for adults with severe hearing loss. CIICA supports the recommendations, including the need to ensure that all who could benefit are assessed for a Cochlear Implant. CIICA is especially pleased to see the focus on ensuring that all care is person-centred and what is going to work best to improve their lives. Our Chair Leo De Raeve has been one of the leaders of the 52 international experts and involved on behalf of CIICA in this process. The CIICA network has had input to their development through our CIICA CONVERSATIONS.

The Living Guidelines development process requires public consultation and feedback on the recommendations and good practice statements. The document is now open for comment from International Cochlear Implant Day, 25th February 2023 until the 31st May 2023. This is your opportunity to comment!

You can download the recommendations at https://adulthearing.com/living-guidelines/ and the template for comments at Public Consultation_Submission Template  and return to guidelines@htanalysts.com.au.

You can also visit the MAGICapp link HERE for the full guidelines, recommendations, and technical report. You can submit your comments using the feedback tab located under each recommendation in MAGICapp OR by downloading and using the submission template and emailing it to guidelines@htanalysts.com.au. Please note you need to sign into MAGICapp to leave a comment and these comments will be public. If using the submission template, the feedback, identifiable information will only be visible to the administrator and remain anonymous. All feedback will be considered by the Task Force.

CIICA has already contributed to the development of the guidelines through our CIICA Conversations – see the summaries of these conversations at LIVING GUIDELINES FOR CI FOR ADULTS – CIICA (ciicanet.org) and now the recommendations are open for the final consultation.

Back

WORLD HEARING DAY 3 MARCH!

EAR AND HEARING CARE FOR ALL:  LET’S MAKE IT A REALITY 
Many resources to help you. https://www.who.int/campaigns/world-hearing-day/2023

#worldhearingday #hearingcare

World Hearing Day 2023 highlights the importance of integrating ear and hearing care within primary care, as an essential component of universal health coverage

Key messages

  • Ear and hearing problems are among the most common problems encountered in the community.
  • Over 60% of these can be identified and addressed at the primary level of care.
  • Integration of ear and hearing care into primary care services is possible through training and capacity building at this level.
  • Such integration will benefit people and help countries move towards the goal of universal health coverage.

On this day, WHO launched a new training manual – Primary ear and hearing care training manual. The manual will be accompanied with trainer’s handbook and other community resources and needs to be shared widely in primary care services. Down load at https://www.who.int/health-topics/hearing-loss#tab=tab_1

Launch of the World Hearing Forum website

Ahead of World Hearing Day on 3 March, the World Hearing Forum launched a website under the banner ‘Ear and hearing care for all!’. Created by the Forum’s ‘Changemakers group’, the site contains powerful stories of high-profile supporters and everyday “Changemakers” – people from around the world living with hearing loss. We hope their stories will help generate awareness while driving action on hearing loss. Collectively, our voices are stronger. We invite you to visit the website, read the stories and share with others.

Back

Celebrating INTERNATIONAL CI DAY and CIICA’s Second Birthday!

25 February is International CI Day and CIICA’s Second birthday!

EURO-CIU began International CI Day in 2009 to commemorate the first CI on February 25, 1957 in France. Since 2009, this day has been celebrated all over the world, sponsored by EURO-CIU. Throughout Europe there are more than 500,000 people who have received cochlear implants, 60% are adults and 40% are minors, at the time of implantation. 

Now February 25 was also CIICA’s birthday and CIICA’s network is celebrating CI round the globe!

CIICA celebrated with their CIICA LIVE event on 23 February: Delivering Person and Family Centered Care in CI Services. Members from across the globe discussed this vital and neglected topic. Go to https://ciicanet.org/events/ciica-live-delivering-person-and-family-centred-ci-services/ and see the pdfs of the presentations – and the videos with captioning up soon!

A cake for all of us from Georgia!

EURO-CIU have chosen the theme for this year:

Proud to be me. Hear me now.

Members of EURO-CIU made videos to share on this theme – see some of the videos here with great messages:

Moving to Australia: CICADA hosting celebratory picnics!

We in Queensland Australia are celebrating with a picnic at Bribie Island, a day to enjoy chatting and enjoying the company of those that have had the cochlear implant  journey, a special day. Other venues include Sydney Harbour…. we look forward to sharing the photos! CICADA Queensland www.cicadaqld.org

More details about the event

and to PINDROP, New Zealand

The Pindrop Foundation is proud to honour some of the exceptional individuals in the cochlear implant community in Aotearoa NZ this International CI Day. These individuals have been unwavering in their efforts to advocate for those in need of this life-changing technology and have brought hope to many. Join us as we celebrate their achievements and contributions to the community https://www.pindrop.org.nz/community/ci-day-2023/

and to Latin America

From Patricia Faletty: “On February 25 we celebrate International CI DAY and also we celebrate CIICA anniversary with all Advocates and Cochlear Implant communities in Latino America. As a Founder member I’m pround of this initiative and share with all you after the 25 some pics for CI recipients that are proud and happy and Toast wishing CIICA A GREAT Anniversary.”

and in Ecuador celebrations too:

Campaign for Ecuador
and in Spanish for Argentina Celebrations!

and to Czech Republic

Suki are working  on a campaign “1+1 is more than 2” about binaural implantation with ENT doctors. There will be several radio and television interviews (between 25.2. – 3.3), leaflets with personal stories of bilaterally implanted adults, press release, and finally, an event (March 3) called “SUKI děkuje” (SUKI thanks to…) where we will award three personalities that supported significantly the wellbeing of CI users. The logo reads Hey can you hear me?

and to Austria

Tobias Fischer tells us that The Austrian group, ÖCIG, are planning an open day in the premises of the medical self-help centre in Vienna. We have received information from the CI manufacturers and our members will be available to answer any questions. Tobias Fischer also has a great lecture at  https://earbook.online/pora/ru/en/presentation/oecig/. for the Lehnhardt Foundation. He was the first child to have an implant at the Hannover programme. 

and to Mexico

Teresa Scorzi writes:

We started with an image of my daughter Paola at the foot of the Popocatepetl volcano in Mexico #PosOye, with the phrase “sound is the vocabulary of nature. Sound is the vocabulary of nature…..
Congratulations on all your commemorations

https://www.facebook.com/ScorzaICJ?_rdc=1&_rdr https://m.facebook.com/story.phpstory_fbid=pfbid029MzmuCDVPjTNMvvn86AYpJMLFNoPWiq6TV1onrD7P8ky6NrcAJAuFcw1azqpavyyl&id=100064492042086&sfnsn=scwspwa&mibextid=VhDh1V

and to South Africa

Where Jenny Perold sends us information from the team at Tygerberg Hospital who are continually striving to provide optimal outcomes for those living with hearing loss in under-resourced, rural communities.

One Mom has shared the video of her little child who has CP and CI (one) from Rural Eastern Cape – she is trying (with her brother) to imitate the sheep!

and to Uganda, Eddie Mukaaya sends us a message

“The commemoration of the Cochlear Implant International Day 2023 in Uganda which is also the 2nd CIICA Birthday,  gave me a fresh appreciation of how hearing technology can completely change the lives of people living with hearing loss for the better.  12 years ago when we finally made the decision to implant our daughter, we did not know what the results would be but at least we were sure that her life would not be the same if she was given the opportunity to access sounds.  Seeing my daughter as the Mistress of Ceremony at such a great event at 16 years gave me great joy

Over the years, Elaine has grown to scale up her potential in the mainstream lifestyle thanks to her Cochlear Implant.  Cochlear Implant technology is not a one-time investment but a lifelong journey that transforms the life of CI users on a daily basis.  We are yet to find out what this young lady is not capable of with her implants. She has defied the limitations of deafness.    To say that Cochlear implants work is an understatement where there are good rehabilitation strategies and maximum family commitment and involvement.”

and to UK

AVUK sends us two videos to celebrate International CI day: Lola and Sam speak for themselves:

Celebrating International CI day with Stuart, The CI Coach

and to USA

HLAA (Hearing Loss Association of America sends us this great blog post – do have a look!

Back

EUROTRAK SURVEYS:LOW AWARENESS OF CI IN FRANCE, GERMANY AND UK

Have a look at the reports on UK, Germany and France, and see how little awareness there is even there of cochlear implantation. 

69% of the population in Germany have never heard of Cochlear Implants.

Only 18% of the HA owners with severe/profound HL have been informed about CIs by a medical professional.

In the UK, 41% of the population haven’t heard of CI

Only 30% of HA owners with severe/profound HL have been informed about CI by medical professional. 

EuroTrak is the largest comparative multi-country study on hearing loss and hearing aid usage.

Initiated by EHIMA in 2009, EuroTrak was designed as a means for raising public awareness on key issues of hearing loss and hearing care. It sheds light on hearing loss prevalence as well as on the use of hearing aids and the experience of hard of hearing people with their hearing instruments.

Recent surveys include useful questions on CI awareness, illustrating how little is known about CI even in high income countries.

Go to https://www.ehima.com/surveys/

Back

EUROCIU: XIII SYMPOSIUM WITH OPCI, ONICI

Meeting again after COVID, EUROCIU, OPCI AND ONICI brought together over 200 people in Rotterdam – for an amazing and inspiring conference. A third of the speakers were CI users or parents of child with CI. Accessibility was key with captioning in English, Dutch, German and Spanish; sign language interpretation provided.

Teresa Amat, President of EUROCIU and on the Board of CIICA, welcomed everyone and highlighted the collaboration of EUROCIU and CIICA. Harald Seidler, Vice Chair of CIICA, Teresa and Leo De Raeve, Chair of CIICA and Director of ONICI, and OPCI organisers, Hennie Epping, Peter Helmout and Henk van Rees welcomed us all to this exciting event!

Brian Lamb, Policy Advisor of CIICA, challenged delegates to “stop talking about CI’s as a costly intervention”. Reflecting on the challenge that while globally there are now over one million people with an implant the number should be nearer 20 million if all who could benefit had access. He argued that we should focus on the lost opportunity for the health and social care systems to save money if they do not implant those who could benefit.  One of the significant impediments to this goal remains the perceived cost of the intervention. Sharing some of the latest evidence on the cost-benefit of CI’s he demonstrated that the earlier people had access to CI’s the more society would save on other interventions and the greater the benefits would be for individuals’ quality of life. He urged advocates when talking to Governments and health providers to stress the potential savings from investing in hearing care and CI’s not the cost of the intervention. 

Download his presentation as pdf

Brian Lamb of CIICA asked What does (not having) a Cochlear Implant Cost?, Sue Archbold launched the new CIICA Briefing Paper on Cochlear Implants for Deaf Children. (Downloadable in www.ciicanet.org/resources). Anita Grover, AVUK, and member of our Communication Group, inspiring about what is possible.

Back

CIICA NETWORK MEETS AND PRESENTS AT HEAL CONFERENCE, COMO

For the first time for four years, we were able to meet again at this unique conference, on the shores of Lake Como, thanks to Professor Grandori.

The meeting started with Dr Shelly Chadha, of WHO, sharing the World Report on Hearing and the great initiatives by WHO in Ear and Hearing Care. Delegates were delighted to meet face to face again, and it showed us what we had missed in the past couple of years.

Leo De Raeve, our Acting Chair, introduced CIICA to the delegates and Brian Lamb and Sue Archbold shared the achievements of CIICA in its first year, with CI advocacy members in 53 countries.

CIICA presented on the initial results of the adult survey in collaboration with York University, Toronto, with Professor Connie Mayer and Dr Sue Archbold highlighting the early data from the 1283 respondents. See these results in www.ciicanet.org/news.

As is so often the case, captioning wasn’t available until Lidia Best, President of EFHOH, and Founding Member of CIICA, with the help of the excellent AV team, organised it by link from UK for Saturday morning. So useful not only for hard of hearing but for those with English as a second language, and those troubled by the air conditioning!

Lidia with the excellent captioning

A great opportunity for CIICA networks to get together for the first time in person.

The discussions and plans went on until Saturday lunchtime with a great vibe, thanks to Prof Grandori and his team and the enthusiastic delegates!

Meeting up!

Back

Thanks to all who completed our unique global survey! 1,200 responses from 40 countries!

Cochlear Implants in Deaf and Deafened Adults: A Global Consultation on Lifelong Aftercare

Now closed!

We are fortunate to have received a grant from the Social Sciences and Humanities Research Council, Canada  to carry out a survey of adult Ci users about the services that they receive and would like after implantation. The Principal Investigator is Prof Connie Mayer, York University, Toronto.

This is the first global survey of its kind, and we had a great response. It was in English, German, French, Spanish and Italian.

With many thanks for your help and we look forward to sharing the results!

With your help we can produce the first global report on what services adult users of CI receive at the moment and what they would like! Thank you!
Connie Mayer

Back

25th February 2022: Our First Anniversary and International CI day! See videos from our network on the impact of the pandemic.

We are proud to be celebrating our first Anniversary  on CI International Day, 25 February 2022 with so many messages and videos from around the world. See below!

With our 77 organizations and 350 individuals  we can make a noise about action for CI – increased access, and lifelong services.  You can access here our media messages, our shared evidence base, logo , banner, messages to share and use.

CIICA’s first year hasn’t been an easy one for us all with  a global pandemic. what have we learnt and what has it taught us to take forward?  How can we ensure that Ear and Hearing Care and CI in particular are funded and services provided globally?  We have the evidence – of effectiveness and cost-effectiveness – see here all the messages on these global videos- by users, families and service providers determined to move CI services forward in spite of the challenges.

Let’s not lose this opportunity to improve CI provision!

Downloads:

Video messages from our global network: sharing our experiences, what have we learned?

Helen Cullington
“Happy first anniversary CIICA and thank you so much for everything that you do to raise awareness of and improve access to cochlear implants around the world, we’re so proud to be working with you.”
Patricia Faletty
“We must think about the position of hearing loss in those who have had COVID”
Anita Grover
“It’s been wonderful to see CIICA grow over the last year and to see the impact it’s had in such a short space of time.”
Catherine Birman
“So many people have told me they have been able to hear over zoom and the phone, thanks to their cochlear implants”
Peter Helmout
“I would like to tell you something about the impact of the Pandemic in the Netherlands… it had its pros and cons”
Katalin Gal
“The pandemic taught me how important creativity and resilience is in both therapy and advocacy”
Eddie Mukaaya
(no sound)
Paige Stringer
“I have been so grateful for my cochlear implant in the pandemic”
Robert Mandara
“The pandemic forced me to confront and overcome my fears of video calls.”
Lidia Best
“One of the most important problems is communication – lack of availability of people’s faces and the possibility to lipread has been incredibly hard.”
Barbara Kelley
“The working together has helped us inform the work we do here in the US.”
Qais Khan
“Everyone around you is wearing a mask – you have no idea who is talking..”
Anita Grover
“We’ve also learned a lot from this experience; we’ve found new ways of working, new ways of communicating…”
Vahishtai Daboo
“The impact on mental health of families has been tremendous especially in India.”
Jenny Perold
“Although the pandemic has been such a tough time in so many ways it has taught us about the wonder of online access”
Leo De Raeve
“I would like to tell you about the experience of COVID on the education of deaf children.”
Darja Pajk
“Perhaps more people will understand the problems of people with hearing loss”
Bowen Tang
“Reset, Relearn and Regroup”

Ingeborg Dhooge
“People are resilient, are creative and look for solutions”
Neelam Vaid
“With the right attitude no challenge is insurmountable”

Back

On Women’s Day, the Malala Fund Celebrates the Achievement of a Doctor with Cochlear Implants

The Malala Fund’s campaign to promote the education of young women and girls has featured a young doctor with Cochlear Implants. “I had not seen, read or even heard about a doctor with disabilities so I (mistakenly) believed that medicine wasn’t an option for me,” said 24-year-old doctor Mahrukh Zaidi. Read more of her story here https://assembly.malala.org/stories/why-we-need-more-young-women-with-hearing-loss-to-become-doctors

Back