Deafblindness

Deafblindness is a complex and rare sensory multiple disability in which a person has both an auditory and visual impairment. This combination has a major impact on interaction, communication, orientation and access to information, as both senses cannot compensate for each other or cannot compensate adequately. Worldwide, about 0.2% of the population lives with severe deafblindness, while another 2% or so experience milder forms that noticeably affect daily functioning.

Persons with deafblindness form a very diverse group. The nature and severity of the hearing and visual impairment can vary widely, as can the history of onset. Deafblindness can be congenital or develop later in life, and is sometimes accompanied by additional limitations such as motor, cognitive or medical problems. This means that support needs vary greatly and must always be tailored individually.

Forms of deafblindness

Congenital deafblindness (congenital deafblindness - CDB)

In congenital deafblindness, the impairment arises before the onset of language development. The target group is particularly diverse in terms of both sensory and cognitive abilities. Interaction and communication are usually tactile-assisted and dialogic. Examples of syndromes that can lead to CDB include CHARGE syndrome and congenital CMV infection.

Acquired deafblindness

Acquired deafblindness occurs after the onset of language development, during the course of life. Some people already had a hearing or visual impairment before becoming deafblind, but this is not always the case. The communication methods and modalities used depend on the severity of the impairments and the person's abilities. Methods used may include spoken language, gestures, block letters in the hand, four-hand gestures or Braille. Syndromes such as Usher syndrome and Alström syndrome can lead to acquired deafblindness.

Guidance and support

Communications

Deafblindness requires a specific and tailored approach. Because hearing and vision cannot compensate for each other, tactile-assisted communication is often essential. Each child has their own unique interaction and communication style, making guidance strategies very specific and diverse. Individuals with congenital deafblindness do not go through communicative development naturally or spontaneously. Skills that other children often acquire implicitly and through play need to be taught to them very intensively, explicitly and repeatedly, with a lot of fine-tuning, time and specialised support. The first and most essential step with deaf-blind children is therefore building reciprocal interaction. Only when interaction is reliably established, in sufficiently stable moments and meaningful, can communication be built. Communication and language, in turn, are necessary conditions for further development.

Fundamental areas of development

In these children, development is usually delayed, which means that within the educational provision of primary education, work is often carried out on basic competences and developmental steps that are typically situated between 0 and 2.5 years of age. The process that typically occurs in typical development during the first 2 years of life, easily takes more than 10 years in the development of deaf-blind children (Daelman, 2015, internal documentation; VLOR, 2016). Skills that normally emerge before preschool age require intensive and long-term support in this target group. Unlike the regular pathway, where the emphasis from the start is on learning and cognitive knowledge, in deaf-blind pupils a solid foundation of developmental skills must first be built.

Within the educational provision, the focus is thereby on fundamental developmental domains such as communication and language development, self-reliance (independence and mobility), sensory development and general well-being (Siméa, 2014; BuBaO Spermalie, 2025, internal documentation). These domains are cross-curricular and require intensive, continuous and integrated guidance throughout all daily activities. These domains form the core of education for deafblind pupils and determine their further developmental potential (VLOR, 2016).

Expertise and cooperation

Due to the limited number of persons with deafblindness, there is relatively little scientific research and there are only a few specialised facilities. This underlines the importance of expertise building, knowledge sharing and multidisciplinary collaboration to best support persons with deafblindness - and children in particular - starting from their unique abilities and needs.