After the fall of the Iron Curtain, numerous international organizations began to emerge. One such organization was the European Federation of Organisations of Parents of Deaf and Hard-of-Hearing Children (FEPEDA), established in 1990. For 35 years, it has united parent associations from various European countries to advocate for the rights of families with deaf children.
Founding and Early Development
Before FEPEDA’s formation, there were no organized connections between parent associations across Europe. In some countries, relevant associations and organizations providing services to families with deaf children had not yet been established. Lothar M. Wachter from Germany recalls that in Germany, parents had to seek help independently, gathering information randomly. One of the few sources of information were schools for deaf children: “At that time, these schools were focused solely on spoken language. Sign language was discouraged. These schools also offered early intervention, but only in spoken language. Teachers recommended that children keep their hands behind their backs when speaking,” Lothar remembers.
In 1968, Lothar’s son was born and soon became deaf. It wasn’t until 1980 that the family came into contact with the German association of parents of deaf children. Only then did the Wachter family gain access to sign language. Lothar considers this a turning point and says that his determination to address the rights of individuals with hearing impairments remains strong to this day. He was therefore delighted when FEPEDA was founded in 1990.
According to Lothar, the idea to establish the federation came from Klaus Löning, a parent of a deaf child from Germany who lived in Luxembourg and became the first president of the federation. Lothar helped him significantly, and together with others, they invited founding members from Germany, France, Italy, the United Kingdom, Spain, Belgium, the Netherlands, Greece, Denmark, Ireland, Portugal, and Luxembourg. In the same year of its founding, the Czech organization joined FEPEDA.
Lothar subsequently became a member of FEPEDA’s executive board, a non-governmental umbrella organization representing parents of deaf children in Europe. They met about three times a year and developed the federation’s constitution, which outlines its rules and operations, including member elections, vision, etc. The constitution sets the following objectives:
- To enhance the quality of life for deaf children, adolescents, and their families, regardless of their social, cultural, and financial status.
To promote and contribute to research. - To exchange experiences with respect for parents’ choices.
- To support access to education, future employment opportunities and culture for deaf children.
- To educate the public and support friendships among deaf children, adolescents and their families across Europe.
European Charter of Parents’ Rights
FEPEDA developed a Position Statement on Cochlear Implants for Children and, in 1997, the European Charter of Parents’ Rights, based on the original work of the National Society for Deaf Children in the United Kingdom. “Its purpose is to inform those proposing legislative changes and making significant decisions regarding the education of deaf and hard-of-hearing children at the European Union level and in countries that are members of FEPEDA. The Charter outlines the fundamental rights and principles of parents and their deaf children, including the right to complete information, the right to high-quality support, and the right to participate in decision-making,” states the Declaration.
Subsequently, work continued on other documents, and family meetings for families with deaf children from member countries were organized. Meetings were held in the following cities: Lisbon (1991), Metz (1992), Madrid (1993), Southampton (1994), Prague (1995), Vienna (1996), Naples (1997), and Bergisch Gladbach (2000). The last-mentioned German city hosted 220 participants from 22 countries. According to Lothar, parents, children, and adolescents were very happy to see each other again after some time. However, organizing meetings for so many families became increasingly challenging, leading to a decrease in their frequency. Today, FEPEDA primarily organizes meetings where members from individual countries attend, usually CEOs of national associations, who then share the information obtained from the meetings with their association members, other parents, and the organization’s team. Typically, one or two members from each country participate.
According to Lothar, there is a noticeable positive development in the rights of families with deaf children, to which FEPEDA has contributed.
Equality for Deaf Children
FEPEDA continues to support equal rights for deaf and hard-of-hearing children and young people, as well as their families, throughout Europe. Its goal is to contribute to a fully inclusive European society where deaf and hard-of-hearing children, young people, and their families have equal opportunities and participation in society. FEPEDA is also a member of several international organizations: the European Disability Forum (EDF), the European Platform of Deafness, Hard-of-Hearing, and Deafblindness (EPDHDB), and the Global Coalition of Parents of Children who are Deaf or Hard of Hearing (GPODHH). FEPEDA representatives also collaborate with the World Hearing Forum (WHF WHO) and participate in meetings of the European Union of the Deaf (EUD).
According to FEPEDA’s current president, André Cuenca, FEPEDA’s vision remains unchanged. Over the past 35 years, he has observed significant positive changes in the rights and quality of life for deaf children and their families, which FEPEDA has contributed to through awareness-raising and political engagement. André notes that the main changes include greater inclusion of deaf children in mainstream schools, increased societal awareness of deafness, improved communication opportunities through technology, and recognition of sign language. “However, much work remains to achieve full inclusion of children and adolescents with hearing impairments,” adds the current president.
FEPEDA Today
So, what does FEPEDA offer today? According to André, primarily the representation of families with deaf children, enabling the advocacy and improvement of their rights through European organizations connected to the European Parliament, such as the aforementioned European Disability Forum (EDF). “Today, many major decisions made at the European level impact individual countries in Europe. Each FEPEDA member can identify issues arising in their country and express their opinion through FEPEDA to influence European directives,” explains André. A significant benefit of FEPEDA is also the opportunity for members to exchange experiences and draw inspiration from good practices.
André envisions FEPEDA’s future in continuing to raise its visibility among families and members in other countries, gaining additional members to strengthen representation before European authorities, continuing to advocate for the rights of families with deaf children, and expanding interaction among members.
Members exchange tips and share what has proven effective in various countries regarding awareness, professional services, and the use of technology. Between 2020 and 2021, FEPEDA conducted a study titled “Needs of Families of Deaf and Hard-of-Hearing Children across Europe,” which you can find here, including the research findings (just click on the right mouse button and choose “translate to English”). FEPEDA also publishes a newsletter biannually providing updates on developments in different countries.
Currently, FEPEDA has 17 full member organizations from 16 European countries. It continues its mission, responding to the evolving situation of families and their needs, as well as technological advancements.
Author: Lucie Brandtlová, publicist of Czech organization Information Centre of Parents and Friends of Children with a Hearing Impairment (ICRPSP).
Acknowledgements: I am deeply appreciative of Lothar M.Wachter and André Cuenca for their contribution of information.
Photographs: archive of Lothar M.Wachter and FEPEDA
This article was also published in Czech with some variations in a specialized printed journal called Dětský sluch and it will be published online at www.idetskysluch.cz
FEPEDA meeting Bulgaria 2023 
Carlington (Ireland) 2007 FEPEDA Family Meeting 
Finland Helsinki 2008 FEPEDA Family meeting 
FEPEDA meeting Madrid 2024