INTRODUCTION

The International Convention on the Rights of Persons with Disabilities (United Nations, 2006) establishes that persons with disabilities are rights holders and that public authorities are obliged to guarantee the full and effective exercise of these rights. Guided by the principles of participation and inclusion, non-discrimination and equal opportunities, the Convention clearly establishes the rights to educational and labour inclusion, independent living and participation in the community, among others. However, although in recent decades, in Western countries there has been considerable progress in the social inclusion of people with intellectual disabilities, research shows that, in practice, these people have many difficulties in being able to fully exercise their rights (Fullana et al., 2016).

 

The inclusive perspective in research is related to the progressive implementation of the social model in the analysis of disability (Nind, 2011). This model burst onto the scene in Europe in the 1980s and developed in the 1990s as an approach opposed to the individual or medical model that had been predominant until then. Thus, there is a transition from a perspective that sees people with disabilities as incapable of making decisions, in need of protection and people to speak on their behalf, to a new way of understanding disability. The new perspective sees people with disabilities as having the capacity to be self-reliant, to speak up for themselves and their own interests, to make decisions and to have a voice for themselves (William and Shoultz, 1982).

 

Over the last 20 years, the importance of inclusive research in the field of disability studies has been growing, especially in the Anglo-Saxon sphere, as a result of the development of the social model of disability and the "Nothing about us without us" movement that drives self-advocacy movements for the rights of people with disabilities (Strnadová and Cumming, 2014). There is now considerable agreement that inclusive research should include the following principles (Walmsley andJohnson, 2003).

• The research problem or topic should belong to people with intellectual disabilities, even if they are not the initiators of the process.

• It should be of interest to people with intellectual disabilities and non-disabled researchers should be supportive of people with disabilities.

• It must be collaborative: people with intellectual disabilities must be involved in the process with the help of people without disabilities.

• People with disabilities should be able to exercise some control over the research process and outcomes.

• The research question, process and reports should be accessible to people with disabilities.

 

In order to identify the tools of scientific dissemination on the autonomous life of people with intellectual disabilities, an overview of the types of products used for dissemination such as scientific journals, repositories and databases and some of the most prestigious international journals is given below. It also highlights the importance of cognitive accessibility for outreach to reach the target audience in line with the rights paradigm referred to in this chapter.

 

SCIENTIFIC PRODUCTS RELATED TO THE AUTONOMOUS LIFE OF STUDENTS WITH INTELLECTUAL DISABILITIES

The scientific production on independent living of people with intellectual disabilities in the university environment focuses on the access and university life of people with intellectual disabilities in higher education institutions, with an emphasis on the services and adaptation needs of teaching and care services of the institutions. However, the study of independent living of teaching or research staff is very scarce.

Scientific publications related to intellectual disabilities and research focus mainly on people with ASD. Thus the work of Hees et al. (2015) makes an interesting review that brings together recommendations around the most studied areas in the academic literature such as: personalisation, safe environment, planning, communication, academic adaptations, educational coaching, daily life in the university environment, psychosocial support, leisure and rest activities.

• - Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs. Journal of Autism and Developmental Disorders, 45(6), 1673-1688. https://doi.org/10.1007/s10803-014-2324-2

The following publication by Gobec et al (2022), is one of the few bibliographical references that raises a future issue: once students with intellectual disabilities finish the university programme, what possibilities are open to them? The study raises alternatives for employment, but also for a more complete higher education in which research plays a fundamental role.

• - Gobec, C., Rillotta, F., & Raghavendra, P. (2022). Where to next? Experiences of adults with intellectual disability after they complete a university program. Journal of Applied Research in Intellectual Disabilities, 35(5), 1140-1152. https://doi.org/10.1111/jar.13000

Alquzan et al. (2019) conducted a systematic review of scientific articles of higher education programmes for people with intellectual disabilities from the perspective of all stakeholders. Each group identified several barriers to accessing higher education, namely physical and academic barriers for students with disabilities, their parents' understanding of the higher education system, and the lack of training of higher education staff.

• Alqazlan, S., Alallawi, B., & Totsika, V. (2019). Post-secondary education for young people with intellectual disabilities: A systematic review of stakeholders’ experiences. Educational Research Review, 28, 100295. https://doi.org/10.1016/j.edurev.2019.100295

GENERAL OUTREACH PRODUCTS (OUTREACH PUBLICATIONS ON INDEPENDENT LIVING)

There are several repositories and databases specialised in scientific literature related to intellectual disability and independent living. These resources are very useful, as they allow centralising the search for academic information, facilitating access to the most recent and relevant studies and avoiding the dispersion of literature on this subject in different sources and non-specialised resources, thus facilitating the work of researchers. In addition, they are usually online resources with advanced web accessibility criteria so that the bibliographic search by people with intellectual disabilities is more user-friendly.

Repositories and databases

• - Riberdis, the IBERoamerican Repository on DISability,

This repository compiles and disseminates the scientific production in digital format and open access that is produced in the Ibero-American area in relation to topics related to disability. The contents of the repository are grouped into thematic communities and geographical sub-communities. These sub-communities, in turn, classify the resources into different collections according to their typology: journal articles, reports, doctoral theses, book chapters, papers and communications, etc.

Riberdis is a member of the international Open Access Initiative movement, which means that all the documents included in the repository are freely accessible. The repository also uses the Open Archives Initiative (OAI) interoperability protocol, which allows to increase the visibility of the documents by offering them jointly with other international repositories.

• Library on Disability Studies. University of Manitoba (Canada)

This online resource provides a comprehensive overview of different resources for accessing studies and scientific publications worldwide. It distinguishes between the main multidisciplinary databases, thesis and dissertation search engines, grey literature, main international organisations on independent living and intellectual disabilities, open access ebooks, journals and newsletters, scientific networks and other websites with documentation of interest in this field.

https://libguides.lib.umanitoba.ca/c.php?g=548974&p=3869628

Journals with high international scientific impact

There are journals specialized in intellectual disabilities that include several issues per year with specialised scientific articles. The following is a sample of the journals with the highest scientific impact in this field, all of them indexed in the main academic databases such as Web of Science or Scopus. A significant part of the articles they contain have paid access or can only be accessed free of charge from academic or scientific entities, even so, they also include many open access articles:

• - The Journal of Intellectual Disabilities is a peer-reviewed journal that provides a medium for the exchange of best practice, knowledge and research between academic disciplines and professionals in educational, social and health care settings to advance services for people with intellectual and learning disabilities.

https://journals.sagepub.com/home/JLD

• - Journal of Applied Research in Intellectual Disabilities (JARID) is an international, peer-reviewed journal that brings together findings from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research conducted in the UK and abroad by authors from all relevant professional disciplines. It is aimed at an international and multidisciplinary readership. JARID publishes six issues a year. Topics covered include community living, quality of life, challenging behavior, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service delivery.

https://onlinelibrary.wiley.com/journal/14683148

• Global Journal of Intellectual & Developmental Disabilities (GJIDD) is an international, multidisciplinary journal in the field of intellectual and developmental disabilities. GJIDD is a peer-reviewed, open access scientific journal that aims to publish a comprehensive and reliable source of information on the origin, prevention and treatment of intellectual disabilities. GJIDD is dedicated to meeting the information needs of those seeking effective ways to help people with intellectual disabilities. The journal reports on new approaches, programme developments, administrative tools, service utilisation studies, programme evaluation, community surveys, training and case studies, public policy issues and current research on intellectual disabilities. GJIDD is an indispensable reference and resource platform for doctoral and master's level universities, teaching hospitals, research organisations, science and human services libraries, and local, state and federal agencies interested in understanding the origin, prevention and treatment of intellectual disability.

https://juniperpublishers.com/gjidd/

 

• Journal of Intellectual and Developmental Disability is the official journal of the Australian Society of Intellectual Disability (ASID). JIDD is an international, multidisciplinary journal in the field of intellectual and developmental disability. JIDD publishes substantial original research from both established and newer academic disciplines (such as sociology and geography) that address the situation and concerns of people with intellectual disabilities, families and staff that support them. It accepts research on commonly associated developmental and neurodevelopmental disabilities only when these are linked to intellectual disability. JIDD accepts qualitative, quantitative and mixed methods research; formal literature reviews; well-structured case studies and theoretically based commentaries. It also reviews highly specialised books that are unlikely to be reviewed in other ID journals.

https://www.tandfonline.com/action/journalInformation?show=aimsScope&journalCode=cjid20

Open access journals

In addition to these journals we can find open access journals where all articles and publications are available online for any user. The Directory of Open Access Journal (DOAJ) facilitates access to these open access journals there is, this directory has a total of 30 open access journals on disability. Although they are not specific journals on intellectual disabilities, they do include numerous articles on research on intellectual disabilities which can be accessed through the search engines of the websites of each of these journals. Below is a link to the DOAJ disability-specific journals.

https://doaj.org/search/journals?ref=homepage-box&source=%7B%22query%22%3A%7B%22query_string%22%3A%7B%22query%22%3A%22disability%22%2C%22default_operator%22%3A%22AND%22%7D%7D%2C%22track_total_hits%22%3Atrue%7D

SCIENTIFIC PROCUCTS ON COGNITIVE ACCESIBILITY

 

With the arrival of technological media in the 21st century, we have witnessed a radical transformation in the dissemination of science. Digital libraries and online databases have changed the way researchers produce, access and publish the results of their research.

The first steps in the digitisation of research were promoted and monopolised by large publishing companies that tried to privatise access to and dissemination of science. Gradually, however, an open access model is gaining ground, allowing research results to be disseminated more easily and at no cost in order to promote their dissemination, knowledge and transfer.

Despite immediate open access to research results, people with disabilities face unique barriers to accessing information. Researchers with disabilities often do not have equitable access to scientific information, including difficulties and barriers to accessing data and leading scientific publications, which are often not available in accessible formats.

But scientific information is not limited to downloading journals and databases. Accessing research data can mean using online software, websites or interactive maps, and attending webinars or conferences. When scientific results are not accessible, people with disabilities - researchers, policy makers, advocates and others - are prevented from fully accessing information, limiting their knowledge of research, participation and inclusion.

As plans are developed to open up access to research results, accessibility of information and data for people with disabilities, and especially intellectual disabilities, must be a central component of open and universal access. Education, training and, of course, research should focus on the principles of universal design, provide a basic understanding of communication and information accessibility, and review best practices to support inclusion, such as alternative text for non-text content such as figures and images, captions for videos, and plain language summaries.

Intellectual disability affects the way people process information. For example, it can affect perception, memory, language, attention, problem solving and comprehension. Categories and conditions used in this field vary, and includes intellectual disabilities, developmental disabilities, attention deficit hyperactivity disorder (ADHD), autism, dementia, dyslexia, etc.

According to the W3C (international consortium that generates recommendations and standards that ensure the long-term growth of the World Wide Web and establish internationally recognised web accessibility criteria), technology offers opportunities for people to interact with content and process information in ways that make it easier for them. For example, people can

• navigate web content using a variety of strategies

• access information in text, audio or other formats

• change the presentation of content according to their individual needs or preferences.

• Optimise the user experience for people with cognitive and learning disabilities.

In addition, the dispersion of disability research sources makes it difficult for people with disabilities to access research published on numerous portals, each with different accessibility and usability criteria, which makes it very difficult for people with intellectual disabilities to navigate scientific resources.

Bibliographic references

Fullana, J., Pallisera, M., Vilà, M., & Puyalto, C. (2016). Las personas con discapacidad intelectual como investigadoras. Debates, retos y posibilidades de la investigación inclusiva. Empiria. Revista de metodología de ciencias sociales, 33, Art. 33. https://doi.org/10.5944/empiria.33.2016.15866

Nind, M. (2011). ”Participatory data analysis: a step too far?”, Qualitative Research, 11, 4: 349-363.

Williams, P. & Shoultz, B. (1982). We can speak for ourselves. Human Horizon Series. London: Souvenir Press.

Strnadová, I.; & cumming, T. M. (2014). “Editorial. People with intellectual disabilities conducting research: new directions for inclusive research”. Journal of Applied Research in Intellectual Disabilities, 27, 1-2

Walmsley, J. & Johnson, K. (2003). Inclusive Research with People with Learning Disabilities: Past, Present and Future. London, Jessica Kingsley Publishers.