News

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.

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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.

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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.