Insights from Delegates: CI Advocacy in Action in Brussels 2024

Nothing about Us Without Us ……..a reality at this first CI Advocacy in Action Conference, Brussels

100 delegates from 27 countries – including 38 CI users had their voices heard, sharing their advocacy successes and challenges – with passion! Thanks to all our speakers – see their presentations as pdfs in resources. Thanks to Shelly Chadha and Carolina Der from WHO, to Sara Robinelli, Prof of Health Communication, and Frances Gallimore – CI user and writer from Netherlands – who talked movingly of the stigma of deafness.

There are times in life when you feel you witness to something extraordinary. This first CIICA conference, led by those with cochlear implants is one of those times.

Global, inclusive, friendly, fun!

Loved everything ! – dynamic, diverse, perfect!

CHECK OUT GRAEME CLARK’S MESSAGE AND DELEGATES’ REFLECTION VIDEO

Graeme Clark’s inspiring message for CIICA’s Global Conference: CI Advocacy in Action in Brussels!
Insights from CIICA’s First Global Conference: Delegates Speak Out on CI Advocacy in Action!

How to be part of this vibrant community and spread the word in my country

I feel inspired and energised – going back home full of hope and inspiration

Message from Ariane Laplante Lévesque for CIICA Conference 2024: CI Advocacy in Action
Thank you from mothers of CI kids from Armenia, Georgia, Ukraine, Kyrgistan

Check out amazing videos made by AVID Language –

Video 1 | Video 2

Wonderful interactions with so many inspiring advocates – sharing ideas and challenges..

loved every moment – so many diverse stories: the same goals in different ways…

The young adults from across the globe – the new generation of CI users – telling it as it is today….

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WORLD HEARING DAY 2024: CHANGING MINDSETS

World Hearing Day 2024, had as its theme Changing Mindsets – so many global activities!

Eddie Mukaaya (Uganda) of CIICA led a CIICA Parents Group Conversation – Changing Mindsets,

How do you do it? with Ekaterine Tortladze, LIubov Wolowik and Leona Pejcharova. Participants from 16 countries joins the inspiring conversation – how to change mindsets about deafness in children and about CI? What tools do you use? There were amazing examples of inspiring and innovative changes that had been made.

Groups had changed society views, government policies, educational practice, audiology and CI services – and shared their examples.

Its a big goal and it would be nothing without the energy of parent organisations. See the summary in CIICA Conversations.

FEDERATION AICE, SPAIN, IN ACTION FOR WORLD HEARING DAY

Introducing the HEAR·T Initiative: Hearing Empowerment, Advancement, and Robotics in Technology

March 2, 2024, for our first Virtual Congress: “HEAR·T Initiative: Pioneering the Future of Hearing Healthcare” World Hearing Day 2024.

Our mission is to pioneer a person-centered approach that integrates cutting-edge technology, innovation, and optimized audiological care to empower individuals to achieve their best hearing and fullest communication potential. For the past six months, Regina Presley, Au.D., FAAA, CCC/A; Michal Luntz, MD; Gil Kaminski, MBA; Eliana Cristofari, M.D. PdD, and I, Jodi Michelle Cutler have examined global hearing health care needs. Across our disciplines, we are excited to see how research and technology can provide innovative approaches to care.

THE FIRST VIRTUAL CONGRESS ON WORLD HEARING DAY WAS TRULY GLOBAL… THANK YOU ALL!

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Young Adults with CI Matter: CIICA’s New Report to Share!

ON INTERNATIONAL COCHLEAR IMPLANT DAY AND CIICA’S THIRD BIRTHDAY

YOUNG ADULTS IMPLANTED AS CHILDREN AND NOW ADULTS SPEAK OUT

We are pleased to share our new report, Young Adults with CI Matter, looks at the data from our global survey from those implanted as children and now young adults. It adds the issues arising from their CIICA Conversations and the Global Advisory Group of Young People with CI to produce a unique comprehensive report from this pioneering group.  

Download the Full Report – Young Adults with CI Matter Full Report

Download the Briefing here – Young Adults with CI Matter Briefing

I am so used to it I can’t do anything without my CI.

These young adults are the first to grow up who are deaf, hearing with their implants. They are highly satisfied, but concerned about ongoing support and costs. When you are implanted at a young age, there is a long lifetime of funded CI services needed.  A responsibility for all!

Young Adults with CI – Hear their voices…

“I’ve always heard through a cochlear – so it’s all I know”

They report that 97% of these young people expressed overall satisfaction with their implants.

“I am super satisfied!

Now I am 29 years old and had the same processor 20 years taking really good care of it. To replace is very expensive

However, they are concerned about the high cost of devices, accessories and repairs and ongoing costs for technology support throughout their lifetime. 10% have no spares. 

“Now I am 29 years old and had the same processor 20 years taking really good care of it. To replace is very expensive!” 

They want to broaden the current concepts of deafness including those with CI.
A young person from Uganda…

CI has surely modernised the concept of deafness. 

They propose the development of a new stakeholder group of young people to promote the benefits CI has brought and ensure the changes which could ensure lifelong hearing from CI, and full participation in society through their Agenda for Change. 

The Global Advisory Group of Young Adults with CI: Jana Beneito, Spain, Jehan Daboo, India, Jessica Hissam, USA, Qais Khan, UK, Holly Loach, UK, John Lui, Australia, Manuela Malheirossilva, Brazil, Elaine Mukaaya, Uganda, Ava Pearson, UK, Bowen Tang, Canada, Theo Valles, USA.

DO SHARE THE REPORT WITH YOUR MEMBERS AND COLLEAGUES AND FRIENDS. THANKS TO EVERYBODY WHO HELPED WITH DESIGN OF THE PROJECT AND WHO RESPONDED.
SPECIAL THANKS SO THE GLOBAL ADVISORY GROUP OF YOUNG PEOPLE WHO WILL LAUNCH THEIR AGENDA FOR CHANGE AT OUR CONFERENCE: CI ADVOCACY IN ACTION, BRUSSELS , MAY 2024. 

Please share the invitation with your members, colleagues and friends!

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CELEBRATING INTERNATIONAL CI DAY AND CIICA’S THIRD BIRTHDAY

United by a passion to hear…. this year’s message.

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. Globally about one million people have received cochlear implants.

Young Adults with CI Matter – Hear their voices…

CIICA celebrated at the CI2024 Conference in Gran Canaria, Spain

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CIICA AT THE WORLD HEARING FORUM, WHO, GENEVA

CIICA is delighted to be a member of the World Hearing Forum and to be able to attend the second World Hearing Forum meeting and the Stakeholders meeting. A busy three days in Geneva at WHO but it was great to meet up with all the inspiring people from across the globe who are moving on advocacy for Ear and Hearing. We all said a huge thank you to the first Steering Committee who have done an amazing job, especially in the Pandemic, with so much achieved.

Ruth Warick, with Peter Thorne, and Sue Archbold, with Moses Sarwadda, lead the two new work streams for the new Steering Committee and we explored how we can take these ahead, over the next few years.

Sue Archbold, Leo De Raeve, Brian Lamb, Ruth Warick, Teresa Amat, and Paige Stringer from CIICA were there and it was good to be able to spread the work of CIICA and to learn from others. Brian Lamb is seen arguing for adult hearing screening at the Round Table discussion.

World Hearing Day is on 3 March each year, and in 2024 the theme will be Changing Mindsets: Let’s make Ear and Hearing Care a Reality for All. New resources will soon be available to share – and for planning your exciting activities.

WORLD HEARING DAY 3 MARCH 2024

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Report from our Global consultation with adult CI users: CI SERVICES MATTER

We are delighted to share the report from our global survey of adults with CI. Download the full report here and download the Briefing here to share.

The First Global Survey of deaf and hard of hearing adults using cochlear Implants finds very high satisfaction rates and highlights the need for lifelong services to ensure lifelong communication

The first ever global survey of deaf and hard of hearing adults with cochlear implants (CI) reveals that 96% expressed overall satisfaction with their implants with the same number being satisfied with the services they received.

Profoundly deaf users found that the implants transformed their abilities to hear and communicate in everyday life. As one user commented: “Going back to listening is priceless – my life has been completely changed for the better”.

However, the survey also revealed that users often struggled to get appropriate support and rehabilitation after surgery as they learned to use their implant, with 27% receiving no rehabilitation support and 32% feeling they did not have enough support. As another respondent said; “It would have been nice to have some support. I had no rehabilitation – I taught myself everything.”

These CI users were reliant on their CI for everyday communication and required lifelong technical support for the external parts of the device: “ I need services so that my CI will work and be supported right up to the day I die”.

Ongoing funding was also a major issue: 54% had to pay for important accessories and 26% did not have access to replacement processors, essential for the functioning of the Implant. A further 36% had to pay for repairs themselves.

Ongoing funding for the lifelong services is required: “We wish the high prices for our CIs would come down, it is impossible to get new accessories, new processors, etc”

The lack of ongoing services placed restrictions on users benefiting fully from cochlear implantation and their leading independent and productive lives. Lack of continuing investment in CI services and support also undermines the potential savings to health and social care systems from cochlear implantation.

We need significant changes in the way CI services are provided by health systems to ensure that these deaf and hard of hearing adults can retain their independence and that health and social care systems save on the increased burdens that would otherwise result. These changes include:

  • Rehabilitation to be available from the beginning as part of the core provision of implant services.
  • Quick and ready access to technology support when required, including spare parts such as processors, cables and coils, regular processor upgrades.
  • Person-centred services, with access to appropriate peer group support and counselling services
  • Funding to ensure sustainability of services and access to CI services throughout life.

Chair of CIICA Leo De Raeve said; “This survey is crucial in giving us a picture of how cochlear Implants are valued by users and the profound difference they are making to their lives.  CIs provide access to communication and society while saving health and social care services money. If we are to make the most of this amazing development in global hearing health, we need also to ensure that the 1 million users of CI are fully supported in the long term and it is not only those with deep pockets who can afford to have this life enhancing support”.

A CI user summed up the impact of her implants:

“No implant: no sound, no family life, no friends, no job (I am a nurse), no birds, no cat’s purr, no wind in my ears, no sound of waves, no children’s laughter…. Implants= life.”

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Quality standards for Rehabilitation in Children with CI

Leo De Raeve was one of the leading authors of a recent published article on “Quality Standard for Rehabilitation of Young Deaf Children Receiving Cochlear Implants”.

It is one of the outcomes of the European KA202 Erasmus+ project ‘VOICE’, Ref. No.: 2020-1-RO01-KA202-080059.
The article has been published recently in ‘Medicina’ as part of a Special Issue on ‘Current Trends in Otorhinolaryngology and Head and Neck Pathology’ and is available online:
Website: https://lnkd.in/djBSDVe4
PDF Version: https://lnkd.in/dVyJcxbD

You can also download the Quality Standards for rehabilitation of young deaf children receiving CI’s from the project website:https://lnkd.in/dBuri3qA . At this website you can also download a handbook for therapists, you can follow an e-training course on rehab and there is a lot of information available for parents.

It is essential that we think about the rehabilitation needs of young deaf children with CI.  You can also download the CIICA resource about Deaf Children with CI. 01027_CIICA CHILDRENS BRIEFING_4PP

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LAUNCH OF THE ADULT LIVING GUIDELINES!

Download CIICA’s summary of the Living Guidelines and use them for your advocacy activities.

Less than 1 in 10 of those who are deaf and could benefit from a cochlear implant (CI) have access globally. CIICA was delighted that our Chair Leo De Raeve was Co-Chair of The Task Force and to provide the CI user and family voice to the Living Guidelines Project through our Conversations. The project has developed evidence based living practice guidelines that can be adapted and adopted in country, in order to optimise the lifelong care for adults eligible for CI. These guidelines have been painstakingly developed through a systematic review by a dedicated team of researchers, audiologists, clinicians, and cochlear implant users, bridging the gaps between cutting-edge science, real-world application, and the lived experiences of CI users.

It is hoped the Living Guidelines for adult cochlear implantation will help at addressing the needs of adults experiencing hearing loss and provide a comprehensive roadmap towards cochlear implantation. Download the full Recommendations here – PDF

The Recommendations and Good Practice Statements

  • Hearing, Screening and Assessment
  • Referral (for hearing healthcare evaluation/management)
  • Specialist Evaluation
  • Surgery
  • Rehabilitation
  • Patient Outcomes and Measures

You can find more about the process of development and the complete Recommendations at https://adulthearing.com/standards-of-care/

Lee Schoushkoff, CEO of the Pindrop Foundation says, “As we continue championing hearing restoration advancements, the Living Guidelines for Adult Cochlear Implantation will be a vital resource in helping to address the crucial and significant unmet need in adults who are potential candidates for cochlear implants. We hope the Living Guidelines will pave the way for better knowledge dissemination, informed decision-making, and streamlined implantation procedures, ultimately promoting healthier, more fulfilling lives for adults experiencing hearing loss.”

Leo De Raeve, Chair of the Cochlear Implant International Community of Action (CIICA) and Co-Chair of The Task Force says, “The Living Guidelines are essential in advocacy work for cochlear implants in adults. They were developed through a systematic literature review and the involvement of users and families through CIICA. The Living Guidelines are essential to increase awareness, access, provision, outcomes, and lifelong aftercare and can be seen as a guide for advocacy to improve the experience and usefulness of cochlear implants for adults. I was delighted for CIICA to be involved in the project  and look forward to using them globally to change CI services.”

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CIICA AT ESPCI 2023

CIICA was delighted to be mentioned in the opening speech by Prof Emmanuel Mylanus at the European Symposium on Paediatric Cochlear Implantation in Rotterdam, where he thanked Sue Archbold for her inspiration and support. The conference had a great atmosphere- exchanging inspiration after so long!

We met many friends and members at our stand – and attracted more!  Many visitors came to learn about our advocacy services -and take our resources…

Stuart McNaughton, Rihab Alikalil, Brian Lamb and Sue  led a stimulating session on Sustainable CI Services – why and how do we deliver them? Manu from Brazil shared her challenges in everyday life, and Qais shared what he would like from his CI service – accessibility. Interacting with the delegates was easy with the Chatbox…

Qais talks about what he wants from his CI services
Manu talks about the biggest challenges as a deaf person

Five young people with CI shared their experiences in an inspiring session, led by Rob Beenders, himself a CI user. A young doctor could hear a mother’s heartbeat with a special stethoscope with blue tooth. These young people had a great time socialising too – at the network event! 

Brian Lamb shared CIICA’s Spend2Save work in looking at sustainability for CI services –

managing hearing loss well actually saves society money as well as changing lives.

Our adult survey includes responses from young adults, implanted as a child, and Sue shared these too – including the comment:  

I’ve always heard through a cochlear, it’s all I know.

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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!

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