News
FEPEDA Research Findings - register for Webinar on World Hearing Day 2023
The European Federation of Parents of Hearing-Impaired Children (FEPEDA) invites you to the public presentation :
FEPEDA Research Findings from the Questionnaire to Investigate the Needs of
Families of Deaf and Hard-of-Hearing Children across Europe, 2020-2021
PURPOSE: Share with main stakeholders the research findings from the answers of 1.273 European families with a deaf or hard-of-hearing child and show the evolution carried out in the last 20 years in Europe
AUDIENCE: European and national lawmakers and representatives of public administrations, international, European and national representatives of organisations of people with disabilities, in general, and with a hearing disability in particular, and professionals involved in hearing loss and parents of deaf and hard-of-hearing children
DATE: Friday, March 3rd at 10:00 AM (Central European Time)
DURATION: 1 hour
LANGUAGE: English
ACCESSIBILITY: English captioning and international sign language
SPEAKERS: Introduction by André Cuenca, President of FEPEDA and presentation by Sari Paloposki, Vice President of FEPEDA and Research project manager
CLICK THIS LINK to register.
World Hearing Day - 3 March 2023
Help kids in Ukraine attend summer school camp
Scholarship fund for orphaned children of Jackie Oduor
FCEI and GPODHH are glad to share news of the Muchilwa Scholarship Fund that has been established at Rosslyn Academy in Nairobi, Kenya, where two of Jacqueline Oduor Muchilwa’s orphaned children are enrolled.
In a moving tribute by Dr. Christine Yoshinaga-Itano, Jacqueline Oduor was posthumously awarded the FCEI Lifetime Achievement Award at the international congress in Bad Ischl, Austria, on June 9, 2022.
Oduor had a strong connection to Hands & Voices and established Kenya Hands & Voices in 2015. Contributions will be accepted by H&V then transferred directly to the Muchilwa Scholarship account to benefit Jackie’s children.
To make a donation for this purpose,
Please donate here: https://secure.qgiv.com/for/hvi
Click on 'dedicate this gift' and in the dropdown 'in memory of' field, write in ODUOR.
Donations will be accepted until July 31st, 2022.
Parent leaders from GPODHH meet in Austria
June 2022
Eight parent leaders met for our biennial meeting in Bad Ischl, Austria on 7 June 2022. The meeting was conducted both face-to-face and virtually as a number of parents were unable to travel to Austria at this time. The main focus of the meeting was the finalisation of our 2022-2026 Strategic Plan.
GPODHH leaders meet via teleconference every two months. The FCEI Conference provides us the opportunity to meet face-to-face every two years. Attendees included parents from Austria, Australia, Germany, India, Ireland, Lithuania, Uganda and the US.
WaveforMe podcast
March 2022
WaveforMe is an international project, initiated by the VAR Cultural Association, dedicated to promoting the creative potential of young people with hearing impairment, cochlear implant wearers or hearing aids.
The first WaveforMe podcast features Dimitrie Luca Gora, a talented young hypoacusic artist, with humor and a lot of determination. The podcast is available in Romanian and English.
https://waveforme.org/podcast/
Hands & Voices Virtual Waiting Room
May 2021
Hands & Voices (US) has a new resource is available for families - Hands & Voices Virtual Waiting Room. This site was created for families with children who have been referred to or are in the care of an audiologist and who are receiving those services through technology or “telehealth.” Much of this information is useful for families who are preparing for onsite visits. Instead of sitting in an actual waiting room at a clinic, some families are in homes or a remote location include waiting to connect with an audiologist through the internet. This connection provides potentially a safer and more convenient way to get important and quality services. What families may lack, however, is some of the information and resources that often are built into an in-person waiting room experience. And that is what H&V has recreated here: unbiased information, resources, and connections for families as they embark or continue the journey with their child. Parents, please spend some time, look around, grab a cup of coffee or tea and explore all that is possible for your child and family. Professionals, please share this new resource with the families you serve and consider adding the link to your website!Parents and their deaf child's futures
Jane Russell shares her details of her current PhD study that is grounded in hearing parents’ ‘knowledges’ about good outcomes for their child. She describes why she wanted possible futures for her child, writing about futures plural rather than future singular.
This article was originally published in the March 2021 issue of the BATOD Magazine and is reproduced with permission
Read the article
Launch of the World Report on Hearing
3 March 2021
The World Health Organisation launched the first ever World report on Hearing in World Hearing Day 2021.
Many causes that lead to hearing loss can be prevented. The WHO estimates that 60% of hearing loss among children is due to preventable causes; and that over a billion adolescents and young adults are at risk of avoidable, irreversible hearing loss due to the common practices of listening to music at loud volumes and for prolonged time.
In those living with hearing loss, timely and appropriate care, through available and effective technologies and interventions, can ensure that they have the opportunity to realize their full potential. These facts along with supporting data and evidence have been presented in the World Report on Hearing, which was requested by the World Health Assembly in 2017.
Watch the launch of the World Report on Hearing: (The event commences at the 3:52 mark)
https://www.youtube.com/watch?v=qnOFHXfG01E
Millions of Children Worldwide Have Unaddressed Hearing Loss
According to the World Health Organisation, 34 million children worldwide have a disabling hearing loss. On World Hearing Day, 3 March 2021, a strong message about early identification and cost-effective interventions is being communicated by parent advocates with the Global Coalition of Parents of Children who are Deaf or Hard of Hearing (www.gpodhh.org) and the European Federation of Parents of Hearing Impaired Children (www.fepeda.eu ).
In the spirit of the WHO’s 2021 campaign, Hearing Care for ALL! Screen, Rehabilitate, Communicate, GPODHH and FEPEDA challenge national health care systems around the world to integrate people-centred ear and hearing care within universal health coverage. Both parent-led groups call for governments to integrate Universal Neonatal Hearing Screening (UNHS) Systems through adoption of the 1-3-6 UNHS Goals:screening by 1 month identification by 3 months entry into early intervention by 6 months of age
Early identification is only the starting point for improved child outcomes. The benefits of neonatal hearing screening will not be realized unless children receive ongoing, affordable services, and support. Every child with hearing loss deserves early identification of their hearing loss, timely early intervention to support spoken or sign language development, according to the choice of their parents, and properly fitted listening devices, when appropriate. Evidence indicates these are key factors for minimizing the impact of hearing loss on a child’s development, educational attainment, and socio-emotional wellbeing.
In addition, GPODHH and FEPEDA emphasize the centrality of the family in each child’s life. In order to prosper, children need an enabling environment for their families and caregivers. Research proves the most important predictor of a child’s success is the meaningful and effective involvement of his/her family. Formalized, measurable family support mechanism must be included in UNHS protocols and practices—and in the thought-leadership of early hearing detection and intervention systems.
GPODHH and FEPEDA champion a world where no child, young person, or adult with hearing loss is left behind.
Download the joint press release.World Hearing Day 2021
3 March 2021 is World Hearing Day and marks the launch of the World Report on Hearing, presenting a global call for action to address hearing loss and ear diseases across the life course.Messages to Policy makers
- The number of people living with unaddressed hearing loss and ear diseases is unacceptable.
- Timely action is needed to prevent and address hearing loss across the life course.
- Investing in cost effective interventions will benefit people with hearing loss and bring financial gains to the society.
- Integrate person-centered ear and hearing care within national health plans for universal health coverage.
Messages to the General public
- Good hearing and communication are important at all stages of life
- Hearing loss (and related ear diseases) can be avoided through preventative actions such as: protection against loud sounds; good ear care practices and immunization.
- Hearing loss (and related ear diseases) can be addressed when it is identified in a timely manner and appropriate care sought
- People at risk of hearing loss should check their hearing regularly
- People having hearing loss (or related ear diseases) should seek care from a health care provider
A Global Conversation about Education
United in Identifying and Implementing Supports for Students who are Deaf/Hard of Hearing
Date: Friday, August 28, 2020 at 8:00 PM LONDON TIME
Language: English with English captioning
Cost: Free
Platform: Facebook Live using Streamyard
Click this link for access to the webinar - https://www.facebook.com/231410311574620/videos/304954507620279<
Join the Coalition of Global Parents Of Deaf/Hard of Hearing (GPODHH) in an interactive discussion with parents from around the world who will share their personal and cultural stories of the types of things parents need to think about and advocate for in the educational setting. Starting with the basic human right of communication access, this Facebook chat will discuss elements of education including: Ensuring social connections, accessibility accommodations, advocating for acceptance in schools, the role of families in successful outcomes in education. No matter where you live in the world, you can learn AND contribute to this conversation in ensuring that all children who are D/HH have access to education.
Audience: Families of children who are deaf/hard of hearing and the professionals who assist them
Parent Facilitators: Janet DesGeorges (U.S.) and Jodi Michelle Cutler (Italy)
Parents who will share their perspectives:
- Joyce Nalugya (Uganda)
- Daiva Treciokaite (Austria)
- Bianca Birdsey (South Africa)
- What does a successful education look like for deaf kids?
- What are your greatest challenges?
- Share some successful advocacy strategies
- Share any resources that have assisted you, and more!
World Hearing Day 2020
Anwesha Kolkata activities for World Hearing Day
Anwesha Kolkata has organised a variety of awareness activities on the occasion of World Hearing Day 2020.
For more information: https://anweshakolkata.org/
Remember to register your World Hearing Day event with the WHO
so the event keeps on growing and raising awareness about hearing loss around the world.
World Hearing Day 2020 - Don't let hearing loss limit you
Help the World Hearing Forum promote World Hearing Day on 3 March 2020. This year, the WHO will highlight that timely and effective interventions can ensure that people with hearing loss are able to achieve their full potential.Key messages for World Hearing Day 2020:
- At all life stages, communication and good hearing health connect us to each other, our communities, and the world
- For those who have hearing loss, appropriate and timely interventions can facilitate access to education, employment and communication.
- Globally, there is lack of access to interventions to address hearing loss, such as hearing aids.
- Early intervention should be made available through the health systems
Share what it is like to be deaf where you live
GPODHH becomes a member of the World Hearing Forum
Touching lives - recognition for Anwesha Kolkata
Congratulations to Anwesha Kolkata on receiving The Telegraph Education Foundation Certification of Honour For "Touching Lives” at Nazrul Mancha, Kolkata. It is a testament to the work and support they provide to children who are deaf or hard of hearing and their families and their relentless effort for social inclusion of children and persons with deafness in West Bengal, India.Anwesha Kolkata is a highly regarded organisation in the field of disability in West Bengal. Started by a parent, Ms Snigdha Sarkar in November 2004, it is an organisation of parents and well-wishers of children who are deaf or hard of hearing.
Congratulations from the GPODHH family!
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Parent scholarship applications open for FCEI 2020
August 2019
A limited number of parent scholarships are available for FCEI 2020 thanks to the generosity of sponsors MED-EL and Bagus Hearing Systems. Applications will be accepted from 1 July 2019 to 30 September 2019. Application forms are available at
_______________________________________________________________________________________________________________________________Review of Best Practices in Family-Centered Early Intervention for Children Who Are Deaf or Hard of Hearing: An International Consensus Statement.
The FCEI Consensus Statement was published in 2013 and has been translated into numerous languages to date. This position paper, also known as the “FCEI Principles,” outlined ten essential practices that serve to guide and standardize family-centered early intervention services for children who are deaf or hard of hearing, wherever they are implemented worldwide.
At FCEI 2020, the consensus group will reconvene for a revision and update of this consensus document. As a part of that group, GPODHH will be actively involved to ensure that the parent voice is well represented. The parent perspective must influence the best practice principles which serve to guide the journey of families like ours, all over the world.
If you would like to participate, further details will be sent regarding the process itself. This is not intended to be a long and tedious task, but rather require a few minutes of your time every few weeks until all the principles have been addressed.
Please contact Bianca Birdsey at info@gpodhh.org for further information about participating in this review process.
Download the letter of invitation.
World Health Organization - World Hearing Forum (WHF), 8-9 August 2019, Geneva, Switzerland
A group of just over 30 people from around the world gathered for this brainstorming meeting including two GPODHH representatives - Bianca Birdsey (South Africa) and Snigdha Sarkar (India) (seen left with Dr Shelly Chadha - Technical Officer, Prevention of Deafness, Prevention of Blindness and Deafness Unit, World Health Organization). The purpose of this current meeting was to initiate the tasks of four working groups: World Hearing Day (3 March annually); Make Listening Safe; 'Champions' and World Report on Hearing (due May 2020). FEPEDA European Family Camp - 4-9 August 2019
NAPADEC - The National for Parents of Deaf Children of Uganda
NAPADEC is a non-governmental organization founded in 2009 with a goal of promoting and advocating for the rights of deaf children and young people in Uganda.
Read about their vision and the work they do with families and children in Uganda.
Location: Takajjunge Mukono - Kayunga Road
Postal address: PO Box 93 Mukono
Email: napadecu@gmail.com
Phone: +256 772-629862
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WHO INCLUDES PARENTS OF DEAF CHILDREN
at Third Stakeholders’ Meeting on Prevention of Deafness and Hearing Loss
3 July 2018: Representatives from the Global Coalition of Parents of Deaf and Hard of Hearing Children (GPODHH) will be attending the 3rd Stakeholder’s Meeting for the WHO Programme on Prevention of Deafness and Hearing Loss on July 3 & 4, 2018, at WHO headquarters in Geneva, Switzerland.
With funding from Aussie Deaf Kids, a GPODHH member organisation, two GPODHH parent leaders will be representing the group’s agenda at the WHO meeting: Bianca Birdsey, MD, the mother of three deaf daughters and Director of South Africa’s Thrive program; and Anisa Ibrahimovic, the mother of a deaf son and an attorney who helped initiate Bosnia-Herzegovina’s Universal Neonatal Hearing Screening project. Birdsey and Ibrahimovic are bringing the perspective and agenda of parents to WHO discussions regarding prevention of deafness and hearing loss._______________________________________________________________________________________________________________________________________
FCEI International Congress 2018
Parent registration rates
Helsinki, 3rd of March 2018
EQUAL RIGHT TO HEARING AIDS
On the World Hearing Day, the European Federation of Parents of Hearing Impaired Children reminds that European children and young people with a hearing disability should have access to free and proper hearing aids with no limit of age.
The European Federation of Parents of Hearing Impaired Children (FEPEDA)reminds that five every one thousand babies born in the European Union have a hearing loss. Many of them wear hearing aids, which allow them to have access to hearing, to information and to oral communication.
Hearing aids are assistive devices, which have been shown as one of the most efficient ways to equal participation for more than 51 million of European citizens with a hearing loss.
However, in most of European Union countries, access to hearing aids implies an additional economical obstacle for people with a hearing disability and their families.
In most of the States, the public system only provides public funding for hearing aids to children and very young people, limitation by age which has no justification. In addition, in most of the cases, this public funding only covers partially the cost of the hearing aid (between 10% and 50% of the cost of hearing aids). However, in some other Member States, persons with a hearing disability have free access to hearing aids, with no limitation by age.
For all these reasons, FEPEDA insists on adopting national legislation for assuring the right of all persons with a hearing loss to have access to free hearing aids, including batteries and spare parts, with no discrimination by age. Hearing aids should be of high quality and adapted to the concrete needs of each person irrespectively of if it is unilateral or bilateral hearing loss.
Only then, EU and Member States will fulfil the obligations stated in the International Convention on the rights of persons with disabilities, of promoting and defending the rights of citizens with disabilities. In particular, article 26 establishes that states: Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.
FEPEDA, established in 1990, is the main platform of representation of families with deaf and hard of hearing children in Europe.