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



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.


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



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



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.



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.”


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:
PDF Version:

You can also download the Quality Standards for rehabilitation of young deaf children receiving CI’s from the project website: . 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


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 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

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

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 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

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!


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!


EURO-CIU welcomes new Apple Memoji depicting a Cochlear Implant user

Apple has announced the new memoji’s will be on additional features coming later this year to better represent users with oxygen tubes, cochlear implants, and a soft helmet for headwear. EURO-CIU has welcomed the move which the group has lobbied for since 2018.

The initative was part of a wider annoncecment by Apple including the launch a new service, called SignTime which enables customers to communicate with AppleCare and Retail Customer Care by using American Sign Language (ASL) in the US, British Sign Language (BSL) in the UK, or French Sign Language (LSF) in France, in their web browsers.

Apple are also adding support for new bi-directional hearing aids. The microphones in these new hearing aids enable those who are deaf or hard of hearing to have hands-free phone and FaceTime conversations.

They are also introducing support for recognizing audiograms to Headphone Accommodations. Users can quickly customize their audio with their latest hearing test results imported from a paper or PDF audiogram. Headphone Accommodations amplify soft sounds and adjust certain frequencies to suit a user’s hearing.

Welcoming the news Teresa Amat, President EURO-CIU, said “We thank Apple for hearing the demands from EURO-CIU and engineering technology to respond to everyone’s needs. We hope all the industry will follow them and hearing loss and cochlear implants will be more visible than ever.”


New Zealand doubles the number of people to benefit from Cochlear Implants following successful campaign

Lee Schoushkoff, the Northern Cochlear Implant Programme chief executive and CIICA steering group member welcomed new funding announced by the Health Minister, Andrew Little. The number of adults getting cochlear implants for hearing loss will almost double, thanks to a big funding boost announced as part of Budget 2021.

Andrew Little said that while children are prioritised and rarely have a long wait for an implant, it is important to help adults too. He added that; “Severe or profound hearing loss has a huge impact on people, affecting their family lives, their social lives and their ability to work.

In our 2020 election manifesto we promised to double the number of cochlear implants the Government funds, and today we are moving to deliver on that. The Wellbeing Budget 2021 increase means that 320 more people will get implants by 2025. For these people, this will be life-changing, meaning they can work and socialise more easily and, most importantly, engage with their whānau and friends.”

Welcoming the move Northern Cochlear Implant Programme chief executive Lee Schoushkoff says the annual funding increase will help to ensure the waiting list doesn’t continue to increase beyond demand while providing certainty to hundreds of New Zealanders who have waited years for a cochlear implant – without any guarantee, they would receive one. “We are extremely relieved that the Government has listened to our calls for action, and prioritised adult cochlear implant funding,” says Lee. “Until today’s announcement, many on the waiting list faced the prospect of never hearing again. They now have an opportunity to not only have their hearing restored but to re-enter the workforce and excel in their chosen fields. For others, it means hearing their children and families again, participating in society and leaving a life of isolation. Their lives no longer remain on hold.”


CIICA LIVE in MAY: The World Report on Hearing and CI Advocacy

CIICA LIVE in MAY: Our first session of CIICA LIVE with 145 registrants from 30 countries shared information from the World Report on Hearing and its evidence for CI Advocacy. See our speakers ready to go! Sue Archbold, Qais Khan, Leo De Raeve, Catherine Birman, Brian Lamb, Beatrice Cusmai, Paige Stringer and Eddie Mukaaya. See the programme in our Events page. It also launched our new resources – summaries to help advocacy groups by providing the evidence in an accessible format. Available to download from our Resources section; have a look!