1. THEORETICAL APPROACH


1.1. 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 and Johnson, 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.


1.2. 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


1.3. 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 specialised 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


1.4. SCIENTIFIC PROCUCT´S 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 digitization of research were promoted and monopolised by large publishing companies that tried to privatize 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 varie, and includes intellectual disabilities, developmental disabilities, attention deficit hyperactivity disorder (ADHD), autism, dementia, dyslexia, etc.
According to the W3C1,, 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.


2. SERVICES

In addition to the online resources, the following are useful services for research on independent living and intellectual disabilities in the different countries involved in the IHES project.
Spanish Centre for Documentation and Research on Disability (CEDID) (Spain)
https://www.cedid.es/es/
The Spanish Centre for Documentation and Research on Disability (CEDID) is an advisory centre to the Royal Board on Disability, to which it offers specialised technical advice for the development of its editorial, training, research, planning and dissemination activities, among others. At the same time, it is a service open to public and private entities, professionals, researchers, academics, people with disabilities and/or anyone interested in disseminating scientific knowledge on disability and providing access to specialised and updated information on this subject.
The CEDID compiles and disseminates the most relevant scientific literature produced both nationally and internationally, as well as documents published by international organisations, public administrations and third sector entities in the field of disability and social policies.
The objectives of the CEDID are to promote and disseminate scientific knowledge on disability, to provide access to specialised and updated information on disability at documentary level to entities and individuals interested in this field, and to provide technical advice to the Royal Board on Disability in the development and dissemination of its editorial, training, research and dissemination activities.

The National Disability Authority (NDA) (Ireland)
https://nda.ie/publications-and-resources
The National Disability Authority (NDA) publishes research reports, policy papers, fact sheets and newsletters on disability issues and produces other resources such as toolkits and an e-learning module on disability awareness.
The NDA's work uses a number of data sources, including census data and other national household survey data. The main sources are linked on the Disability Data Sources webpage. Primary data are also collected and, where appropriate, made available to researchers. See the NDA databases.

Balcão IncluiES (Portugal)
https://www.dges.gov.pt/pt/incluies?plid=1752
Inserted in the "Inclusion for Knowledge" Programme promoted by the Ministry of Science, Technology and Higher Education, the Balcão IncluiES, which gathers contents in support of disability resulting from partnerships with various entities and associations

Centro di Documentazione sulla Disabilità (CDD) (Italy)
http://www.cpaonline.it/web/generale/index.php?id=31
The Disability Documentation Centre (CDD) is a place where a wealth of up-to-date information and knowledge is made available to all those interested in disability issues (organisations, associations, people with disabilities, operators, researchers, parents). The Centre collects specialised information and documentary material of a theoretical and technical-operational nature and makes it available for consultation and loan. It also has an online catalogue designed for easy reading.


3. GOOD PRACTICES

Finally, a detailed list of good practices is provided by country

Inclusive Research Network (IRN) (Ireland)
http://www.fedvol.ie/Inclusive_Research_Network_IRN/Default.241.html
The IRN is a group of people with intellectual disabilities who come together to research ideas and issues that interest them.
Its aims are to
- To create a place where people with intellectual disabilities are supported to do their own research.
- To share power: People with disabilities are part of the decision making at all stages of the project.
- To build a research community in Ireland.
what does IRN offer?
- The IRN offers training to its members on how to do inclusive research.
- IRN members give presentations on the results of their inclusive research projects, both in Ireland and abroad.
- The Inclusive Research Network is supported by the National Federation of Voluntary Service Providers, Trinity College and University College Cork.
- IRN also makes submissions to Government on issues that are important to them.
Below is a link to information from the IRN in easy to read format.
http://www.fedvol.ie/_fileupload/Inclusive%20Research%20Network/IRN%20Easy-to-Read%20Final%20%20Inclusive%20Research%20Network%20-%20%20A%20Participatory%20Action%20Research%20Project%20Report.pdf

Trinity Centre for People with Intellectual Disabilities (TCPID) (Ireland)
https://www.tcd.ie/tcpid/research/
The Trinity Centre for People with Intellectual Disabilities (TCPID) is located in the School of Education at Trinity College Dublin. Its main aim is to promote the inclusion of people with intellectual disabilities in education and society.
Its mission is to enable people with intellectual disabilities to fulfil their potential through a combination of high quality research, dissemination of new knowledge, lifelong learning and vocational training. The Centre offers people with intellectual disabilities the opportunity to participate in a higher education programme designed to enhance their ability to participate fully in society as independent adults.

Disability and Human Rights Observatory (ODDH) (Portugal)
http://oddh.iscsp.ulisboa.pt/index.php/en/2013-01-30-11-59-26/goals
The objective of the Disability and Human Rights Observatory (ODDH) is to monitor the development of disability policy in Portugal and Portuguese-speaking countries and to promote participatory processes for monitoring and promoting disability rights. Its activity is developed around four axes of intervention

Information: dissemination and translation of knowledge from research on disability and human rights, as well as the organisation and dissemination of relevant external resources.

Training: organisation of workshops, seminars, conferences and other training programmes for people with disabilities and their organisations, disability professionals, researchers and other stakeholders.

Research: supporting scientific development in the field of disability and human rights, through partnerships between higher education institutions (both national and international) and disability organisations, as well as links with international networks.

Social intervention and policy advice: field testing and application of participatory tools to contribute to the design, evaluation and innovation of policies that have an impact on the lives of people with disabilities.


Centro Documentazione Handicap (Cooperativa Sociale Accaparlante Onlus) (Italy)
https://www.accaparlante.it/
The Association Centro Documentazione Handicap, created in 1996, runs a documentation centre (active since 1982 on the initiative of the A.I.A.S. of Bologna) on the themes of disability, social difficulties, voluntary work and the third sector.

The association and the co-operative aim to:
- to be an open cultural workshop on the issues of disadvantage and diversity
- promote a culture in which disadvantaged people are "subjects of rights", protagonists of personal and social change
- to give every disadvantaged person the possibility to integrate on the basis of the valorisation of his or her resources
- to bring out of the "reserve" the people and issues that are usually relegated to the sidelines and to give them an appropriate visibility.
- strategic activities
- planning and management of cultural, information and socio-educational services.
- implementation of socio-occupational integration interventions.
- production of specialised documentation, information and communication products for a different dissemination and perception of social issues.