Hands & Voices Virtual Waiting Room
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)
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.
The key messages for World Hearing Day 2021
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
Join the #Hearathon
and use the World Hearing Day photo frame
on your social media posts - it is available in a number of languages and colours
World Hearing Day photo frame - ENGLISH
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
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
Language/Accessibility: English/English captioning
Parent Facilitators: Janet DesGeorges (U.S.) and Jodi Michelle Cutler (Italy)
Parents who will share their perspectives:
Topics to be included:
- 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
Register your event with the WHO so the event keeps on growing and raising awareness about hearing loss around the world.
Share what it is like to be deaf where you live
23 November 2019
All you need to do is record two short video on your smartphone about what it is like to be deaf where you live. Record your child or family in a way that emphasizes your culture, country, language. Show your family involved in an everyday activity where there is plenty of communication. Your clip will be edited into a short film which will be screened at the FCEI Conference in Bad Ischl, Austria in May 2020. The theme of the conference is Diversity and we want to celebrate the diversity of what it is like being deaf where we live around the world.
Please email your video to firstname.lastname@example.org
along with your written permission for GPODHH to use your videos at the conference and on the GPODHH website. In the cover email, please include who is featured in the videos by first name (and how we can recognise them in the clip) and what city/country you live in.
GPODHH becomes a member of the World Hearing Forum
17 October 2019
We are delighted to have membership of the World Hearing Forum from 2019-2021. Our representatives at the Forum are Mrs Snigdha Sarkar from India and Dr Bianca Birdsey from South Africa.
The WHF envisions a world in which no persons experiences hearing loss due to preventable causes and those with hearing loss can achieve their full potential through rehabilitation, education and empowerment.
The goal of the WHF is to facilitate the implementation fo the WHA70.13 resolution and support WHO's advocacy actions in the field of hearing.
Touching lives - recognition for Anwesha Kolkata
7 September 2019
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!
Parent scholarship applications open for FCEI 2020
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 email@example.com 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).
It was sincerely felt that every effort had been made to equally include the GPODHH representatives over the two days. One-to-one conversations with other team members allowed us to contribute input to other groups such as the World Report on Hearing. We specifically encouraged inclusion in the report of international best practice resources such as the FCEI principles document, the need for education to be included at a health level, social stigma, mental health, safeguarding and child abuse as well as the inclusion of parents as stakeholders in the field.
The next meeting of the WHF will be held in December 2019.
FEPEDA European Family Camp - 4-9 August 2019
We welcome families with hearing impaired children and young people across Europe to the Eurofest Germany 2019 camp. The event is chaired by the European Federation of Parents of Hearing Impaired children (FEPEDA), in collaboration with the German association of deaf children (Bundeselternverband gehörloser Kinder), Hessian association of parents of hearing impaired children (Elternvereinigung hörgeschädigter Kinder in Hessen) and German youth association for young people with hearing impairments (Bundesjugend Verband junger Menschen mitHörbehinderung).
All associations have put their experience together to offer a great event to all participants.For adults, we offer lectures and thematic workshops to learn more about empowering hearing-impaired children and youth facing future challenges. For children and young people there will be several different guided activities. The evening's programme is for the whole family.
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
Phone: +256 772-629862
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.
Research shows that the outcome of children who are deaf or hard of hearing depends on the support provided to their parents and families. GPODHH is the only worldwide network of parents of children with deafness or hearing loss joined in advocacy and support regardless of the mode or method of communication used by the family. GPODHH parents function in leadership capacities in their own countries; currently, 20 nations worldwide are represented within the GPODHH coalition. The organisation’s mission is to promote improved systemic protocols and practices that encourage informed choice and the empowerment of families throughout the world. GPODHH’s Position Paper on Recommended Practice has resourced many early intervention programs worldwide. The vital nature of parent input into research, service development and provision for our children has allowed GPODHH to have a global impact.
Outcomes of this stakeholders’ meeting will determine further implementation of the WHO’s resolution on hearing loss prevention and promote greater engagement among all stakeholders. The World Federation for the Deaf, the International Federation of the Hard of Hearing, governmental agency representatives, and academics from higher education institutions are expected to join the dialogue in Geneva.
FCEI International Congress 2018
Parent registration rates
Early bird registration for the FCEI Congress are available until 31 March 2018. Reduced rates are available for parents of children who are deaf or hard of hearing!
GPODHH members look forward to welcoming parents to Bad Ischl, Austria in June.
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.