Photo: Mostphotos

2 Introduction to the Nordic material for the functional assessment of deafblindness

2.1 Organisation of the material

Use of the Nordic material for the functional assessment of deafblindness presupposes a high level of professional competence, developed through both experience and formal education. Fundamental knowledge of deafblindness and functional assessment is required before the material is used.

The material is structured in several parts: an introduction describing the key prerequisites for use, a brief introduction to the sensory systems, and two possible approaches to assessment – one based on observation and one based on interview. Both approaches follow the same structure and may be combined where necessary.

The assessment includes a functional evaluation of vision, hearing and the bodily-tactile sense. This is done on the basis of medical and personal information, relevant tests, and a review of indicators from observation and/or the interview guide. The evaluations are structured according to three domains: communication and interaction, acquisition of information, and orientation and independent mobility. These domains must be viewed in relation to the person’s social life. The assessment concludes with an overall qualitative evaluation of sensory functioning and a conclusion as to whether the functional designation of deafblindness applies.

2.2 Framework of understanding for the Nordic material for the functional assessment of deafblindness

2.2.1 Functional understanding

The Nordic definition of deafblindness is based on a functional understanding in which deafblindness is identified on the basis of how the combined sensory loss affects activity and participation. A functional assessment requires interdisciplinary collaboration between different professions that together can describe the person’s functioning, need for support and developmental opportunities (Videnscenter for Døvblindfødte, 2007).

The assessment also presupposes an understanding of medical information, formal tests and other relevant information, as well as personal and environmental factors such as age, development and life situation.

2.2.2 Dynamic assessment perspective

The material is based on a dynamic assessment perspective, especially in relation to the observation indicators. The purpose of dynamic assessment is to gain insight into the person’s learning and developmental potential, including by looking at changes from initial observation to the situation after intervention (Johannessen, Nicholas, & Nummedal, 2020).

In practice, this means establishing a baseline, trialling various adaptations, and assessing how the person’s functional use of the senses changes. If there is uncertainty concerning the identification of deafblindness, it is necessary to carry out interventions in order to confirm or refute hypotheses regarding functional deafblindness.

2.2.3 Potential and challenges

Deafblindness often involves major challenges in relation to the environment and may limit activity and participation. The assessment must therefore direct attention both to the consequences of the visual and hearing impairment and to the person’s resources and developmental potential.

The material focuses in particular on how the bodily-tactile sense may compensate for visual and hearing loss within the domains of communication, acquisition of information, and orientation and independent mobility. The assessment should both make limitations visible and provide knowledge about opportunities for compensatory strategies.

2.2.4 A domain perspective

The functional evaluation in the material is structured according to the domains in the Nordic definition: communication, acquisition of information, and orientation and independent mobility. These domains are of great importance for the person’s social life, and it is therefore difficult to distinguish social life as a separate domain.

The domains provide a holistic framework for making visible how the combined sensory loss affects functioning. They form the basis for assessing whether the functional designation of deafblindness should be applied and ensure that the assessment does not become three separate evaluations of vision, hearing and the tactile sense.

2.3 Considerations before using the material

2.3.1 Application

Use of the material presupposes knowledge of development, vision, hearing and the bodily-tactile senses, as well as experience of functional assessment. During the assessment, the extent to which indicators from observation or interview questions are relevant for the individual is considered.

Observations and interviews must be planned carefully, with emphasis on partner competence, physical adaptations, safety and an understanding of how day-to-day condition and context may affect functioning (Bøttcher & Dammeyer, 2020).

2.3.2 Ethics and competence in the assessment context

Ethical considerations are an integral part of the assessment process. The assessor must relate to key ethical principles such as respect for autonomy, non-maleficence, beneficence and principles of justice (Beauchamp & Childress, 2019).

The assessment must be conducted with respect for the person’s integrity, and the assessor must proceed on the basis that the person themself is the expert on their own life.

2.3.3 Interdisciplinary collaboration

Because of the complexity of deafblindness, functional assessment depends on close interdisciplinary collaboration (Videnscenter for Døvblindfødte, 2004; 2007). Observations and interviews should be qualified through collaboration between the person themself, relatives and relevant professionals.

Interdisciplinary collaboration contributes to better understanding and provides the basis for specialised services that can strengthen conditions for learning and development (Nordens Velferdssenter, 2016).

2.3.4 Use of interpreter and guide

When direct communication is not possible, provision must be made for interpreting and guiding services. Interpreters and communication partners must take into account the person’s sensory challenges and contribute to structured access to information (Dohm, 2020; Videnscenter for Døvblindfødte, 2007).

2.3.5 Assessment perspectives

Before an assessment begins, the assessor must have a clear understanding of purpose, method and analytical perspective. These choices, together with one’s underlying view of the person, affect the interpretation of observations and the conclusions that are drawn (Bøttcher & Dammeyer, 2020).

The assessor may adopt different roles, such as participant, observer, or a combination of the two. Whatever the role, account must be taken of how the assessor’s presence affects the person being assessed.

2.4 Practical use of the Nordic material for the functional assessment of deafblindness

2.4.1 Optimisation

During observations, the interaction partner should support and motivate the person to use the senses available and adapt demands and activities to the person’s prerequisites and interests (Videnscenter for Døvblindfødte, 2007).

Aids that are used in everyday life must always be in use during observation and interview, as this is crucial for valid evaluations of functioning.

2.4.2 Scoring the observation indicators

Scoring the observation indicators is intended to support systematic and shared assessment practice. Scores are given within the domains of communication, acquisition of information, and orientation and independent mobility, and are based on four response alternatives described by Nicholas, Johannessen and van Nunen (2019). The alternatives are found in section 5.4.

Scores must always be interpreted qualitatively and in the light of context, ethical considerations and interdisciplinary evaluations. The score is a tool within the overall functional assessment.

2.4.3 Final report

The assessment concludes with a qualitative report describing sensory functioning. The report should conclude whether functional deafblindness is present and, where relevant, provide recommendations for further follow-up and adaptations.

2.4.4 Interpretation of the observation indicators

Scores may be presented visually in a graph, but the graph is not self-explanatory. It must always be interpreted in conjunction with observations, context and qualitative descriptions in order to provide meaningful information about the person’s functional use of the senses.

2.4.5 Interview guide

For persons who can express themselves through conventional language, interview may be used as a method or as a supplement to observation. The interview guide is advisory and intended as support for the conversation, not as a fixed structure, and may be used both together with and independently of the indicators for observation.