Young Adults with CI: Collective Advocacy in Action

CIICA has launched the young adults Agenda For Change with a video and briefing highlighting the voices of young adults with cochlear implants. The aim was to raise awareness of their experiences and challenges, and to share this across the global hearing health community and beyond.

Download the Agenda For Change

We are the first deaf young people with CI who are stepping into the hearing world… everyone here, united across the globe.

Our recommendations include:

  • Provision of Lifelong Services
  • Improved Accessibility in Education, Workplace and Public Places
  • Public Education Campaigns to increase awareness of deafness and cochlear implantation

The response has been inspiring. Here are just some ways of the briefing and video have been shared and used, and celebrated worldwide:

The work that CIICA does is valuable. With their video and briefing about International Cochlear Implant Day, I think the awareness of CI users and what they face is growing within the global hearing health industry and I hope it won’t be too long before that awareness can enter the public consciousness too. – John Lui, CI User from Australia

The CIICA agenda was a brilliant resource that helped me communicate my needs clearly and confidently with my university. It led to better understanding and improved support, which I hope will benefit many other young deaf people in higher education.Gargi Agrawalla, CI user from UK

With what I have shared, especially on instagram and facebook, my friends and friends of friends have shared on my behalf and have liked the posts and checked out the website and video! My former teacher who is a teacher for deaf kids saw my post and have shared.” – Raquel Tiana Leblac

The report was a really helpful tool when I started a new job this year, mainly in educating my colleagues in better understanding the kind of barriers I face and the reality of living with cochlear implants. It especially helped me normalise using other hearing equipment in the office, as having the voices of other CI users in the report articulated the support I would need and took the pressure off me having to advocate for myself. Having a global community to refer to is really empowering personally and professionally; now when I talk about cochlear implants to other people, I no longer feel the need to talk about my experiences in isolation as my needs feel universal and connect to others around the world.” – Holly Loach, CI user from UK

Jana Beneito Mana – Bringing the Agenda to Spain
Qais Khan – Shared Awareness with the Employers

I owe pretty much my entire life to my CI. It allows me to attend a mainstream school, helps me build relationships and enables me to integrate and be a part of the hearing world. While CI solves so many problems, there are a few that could be solved with just a bit more attentive, lifelong care. (UK)

Sharing from Australia

John shared his reflections publicly on Hear For You Facebook

Yesterday was International Cochlear Implant Day, where people around the world come together to celebrate the life-changing impact of cochlear implants. These devices can enhance sound clarity, improve speech understanding, and help individuals regain or develop confidence in social settings and the world around them.

We’re especially proud that the cochlear implant was invented right here in Australia, revolutionising hearing technology and changing lives worldwide.

In recognition of this special day, CIICA (Cochlear Implant International Community of Action) marked their 4th birthday by launching the Young Adults With Cochlear Implants Agenda. As CIICA states, “As part of the new generation of deaf people working and thriving in the hearing world, this Agenda exists to connect us to a wider community across the world …”

Sharing with Doctors and Networks in Czech Republic

Marie Stocklova promoted the briefing via the SUKI Instagram account, where doctors and other professionals follow their updates.

Raising awareness in Spain!

Jana took the opportunity to share the Agenda For Change at the AICCV assembly. She explained the agenda, showed the video, and arranged for a translation of the material for attendees.

Why This Matters

All of these contributions show how CIICA’s video and briefing are making a difference in real life:

  • Helping people talk about cochlear implants in their everyday lives and workplaces
  • Making it easier for universities and other institutions to understand and give better support.
  • Reaching people around the world, even in different languages and community events.
  • Spreading widely on social media, giving young adults with cochlear implants a stronger voice.

These efforts show the power of collective advocacy and the value of ensuring young adults with cochlear implants voices are central in shaping CI services.

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WHA Resolution on Sensory Impairment Approved

The World Health Organisation reported a new resolution has now been approved at the 78th World Health Assembly in Geneva on 19-17 May 2025.

Primary prevention and integrated care for sensory impairments, including vision impairment and hearing loss, across the life course.

You can watch the announcement on the WHA recording of the Ninth Committee A session, following this link: https://www.who.int/about/governance/world-health-assembly/seventy-eighth. The relevant section starts at 1h:49m:53s until 1:50:22.

Download the Resolution document here: https://ciicanet.org/wp-content/uploads/2025/05/B156_21-en-WHO-EB-Decision-Hearing-Vision-Res-for-WHA.pdf

Download the Supporting Constituency Statement here: https://ciicanet.org/wp-content/uploads/2025/05/WHA-Consituency-Statement-May-2025.pdf

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How did the CIICA network empower themselves on World Hearing Day 2025?

Paige Stringer, Founder and Executive Director of the Global Foundation for Children with Hearing Loss, had her article on addressing global shortages in professional expertise, published in the World Hearing Day special edition of AG Bell’s Volta Voices digital magazine.

Click here to read the article.

Click here to find out more about the great work at GFCHL.

On World Hearing Day 2025: MEP Zala Tomasic  hosted a Virtual Lunch Debate in the European Parliament with EFHOHAEA and EHIMA on 4 March 2025.

Watch videos of all the speakers here:

MEP Zala Tomasic (EPP): Video
Shelly Chadha (WHO): Video
Monika Chaba (European Commission): Video
Lidia Best (EFHOH): Video
Ariana Laplante-Lévesque (WHO Europe): Video
Mark Laureyns (AEA): Video
Stefan Zimmer (EHIMA): Video
Debate and conclusions: Video

Young Adults empowered themselves on World Hearing Day with their agenda! This new stakeholders’ group, the first to receive hearing through cochlear implants as children, are now entering higher education and the world of work.

See their recommendations for the provision of lifelong services, increased accessibility and public awareness.

DOWNLOAD THE AGENDA

WATCH THE VIDEO

Read WHO’s article about Darja Parjk, a health and care worker with hearing loss, highlighting the importance of empathy and understanding. Darja Pajk works as an occupational therapist at a long-term care facility in Slovenia for people with intellectual and physical impairments. She lives with severe hearing loss in both ears and has two CI.

GO TO ARTICLE & WATCH VIDEO

SUKI in the Czech Republic, celebrated together with an organisation Microtia Czech Republic which focuses on the users of the compensatory aid called BAHD. So there were three presentations about the device and surgery, about the indication criteria and about speech therapy and in the second half of the evening we rewarded three people who – above and beside their job – contributed the most to the improvement of the system support of the users of BAHD in the Czech Republic. https://suki.cz/

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World Hearing Day – 3rd March 2025 – Changing Mindsets: Empowering Yourself

World Hearing Day 2025 and this year’s theme is all about Changing mindsets: empower yourself to make ear and hearing care a reality for all!”

Great resources in a range of languages available here. Promotional Material 2025 to 2022 – World Hearing Day. On World Hearing Day resources will be available here World Hearing Day 2025 and for the launch of WHO-ITU Global Standards for Safe Listening in Video Games and for School education for Smart Listening.

This year’s theme builds upon the 2024 focus on changing mindsets towards ear and hearing care. Individuals of all ages are invited to empower themselves to ensure healthy ears and hearing for themselves and others. This campaign aims to inspire behaviour change to protect hearing from loud sounds, prevent hearing loss, check hearing regularly, use hearing devices if needed, and support those living with hearing loss. Empowered individuals can drive change within themselves and in society at large.

Key messages for 2025: 

·       By 2030, over 500 million people are expected to have disabling hearing loss requiring rehabilitation.  

·       Over one billion young people face the risk of permanent hearing loss due to prolonged exposure to loud sounds during recreational pastimes such as listening to music and video gameplay.

·       How we hear in the future depends on how we care for our ears today as many cases of hearing loss can be avoided through the adoption of safe listening and good hearing care practices. For those living with hearing loss, early identification and access to timely rehabilitation are essential to achieving their highest potential. 

·        You can take steps today to ensure good hearing health throughout life.

Empower yourself and others by participating in World Hearing Day 2025 events.

In 2024, 625 events in 82 countries created a wave of advocacy. Explore how communities worldwide came together to break down barriers and ensure inclusivity for people with hearing loss in the World Hearing Day 2024 Report of Activities.

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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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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!

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CIICA Live comes to YouTube! The World Report on Hearing and Cochlear Implant Advocacy. The evidence.

Here are the presentations from our exciting webinar! Down load our briefings at

Leo De Raeve’s introduction about CIICA and our speakers.


Paige Stringer talks about the World Report on Hearing and it’s importance for us all.


Sue Archbold shares the evidence about CI from the report to use in advocacy work download the briefing in resources.


Beatrice Cusmai challenges us to use social media and the press “we must make our wave of information that let’s people hear the sounds of life”


Eddie Mukaaya inspired us. He managed to get the government in Uganda to waive the taxes on hearing technologies!


Cathy Birman challenges us to choose one of the advocacy ideas and get active!

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