ComRight – Advancing the communicative rights of children with disabilities

Background

Communication is a fundamental feature of humanity. The ability to communicate – to receive, process, store and produce messages – is central to human interaction and participation. Communication rights to freedom of opinion, expression and language are included, with various wording and focus, in almost every convention and declaration of the United Nations (UN), as well as in several Swedish laws. However, people whose communication and language skills are different from those within mainstream society may not be able to completely participate in the activities of society without targeted support. 

According to the Convention on the Rights of Persons with Disability, CRPD (UN, 2006), all state parties shall “take all appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice” (Article 21). The right to access augmentative and alternative communication methods (AAC) is highlighted in the convention. Despite this, persons with complex communication needs are a diverse group whose voices often go unheard in research and service development, and their everyday experiences remain not well understood. 

Especially children with complex communication needs, following for example developmental language disorder, intellectual disability or autism, are often discriminated against and oppressed on the grounds of both age and disability. According to several Swedish recent reports, increasing staff’s competence in communication strategies and AAC is prioritised to increase the quality in social support services for people with disabilities. It is also necessary to increase knowledge and improve competence in communication supporting strategies and AAC to reduce the risk of staff using coercive and restrictive methods.

Aim

This project explores participation and self-determination in children with developmental disabilities from the perspective of human rights within the context of social services, specifically short-term accommodations. The project aims to 1) explore children’s own perceptions and experiences of participation and self-determination, 2) explore short-term accommodation staff’s attitudes towards and operationalisation of child participation, communicative rights, and self-determination, and 3) implement and evaluate the staff-focused program “AKKtiv ComBo” (akktiv.se). The purpose of this group program is to increase staff’s knowledge in communicative rights, communication supportive strategiesx, and AAC, thereby increasing the opportunities for children with complex communication needs to exercise their legal and human rights of, for example, give opinions on issues that affect them, express thoughts freely, and access information.

Methods

This 3-year collaborative research project applies a primarily qualitative longitudinal case research approach. Such approach comprises using qualitative data materials (e.g., interviews, observations and/or text documents) that are collected across a time span within the same setting, and focuses on the temporality (e.g., time and change) of a phenomenon, in this case experiences of and opportunities for children exercising their communicative rights.

We will recruit approximately 10 children staying one or more nights per month at a community short-term accommodation. As all the children, by being eligible for services within the LSS act, have communicative challenges, no single research methodology will be able to respectfully capture the experiences of participating children. Thus, different support and empirical material will be used and triangulated to enable the children to share their experiences. Specific attention will be made to ensure that research methods and materials are accessible to children who use AAC, for example by using communication boards, manual signing, and visual schemes. Participating children will be invited to take part in individual interviews using the communication supportive method of Talking Mats and photowalks. Photographic-based research empowers people with disabilities by providing them with a medium to create visual evidence of life from their point of views and make visible important issues of concern, and can be particularly valuable for persons struggling with communication. Video-recorded, everyday activities at the children’s short-term accommodation will be included in the data collection as a way of ensuring full inclusivity of all children, even those with complex communication needs. The focus of these recordings will be on communication supportive practises at the short-term accommodations are tailored to the organisation of everyday activities within short-term accommodation services. Read more about KomBo at Akktiv.se.

Short-term accommodation staff’s attitudes and experiences will be collected through interviews and questionnaires. A total of 15-25 staff members will be recruited. 

Expert group

This project has a co-production design and includes an expert group with researchers with various lived experiences of social services and short-term accommodations (for example staff, children, parents, managers). We understand co-production as a process of collaboration and collective decision-making, which involves changing the relations of research traditionally separating users and producers

Group members

Ellen Backman
Specialist speech therapist, Ph.D. and researcher

Gunilla Thunberg
University Hospital Chief Speech Pathologist, Associate Professor, Adjunct Lecturer in Speech Pathology at DART

Jenny Aspling
Postdoctoral at Marie Cedershiöld University

Carina Ingelsten
Method developer at the City of Gothenburg

Organisational unit

the section for Health and Rehabilitation

Institute of Neuroscience and Physiology