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Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195

7th International Conference on Intercultural Education “Education, Health and ICT for a
Transcultural World”, EDUHEM 2016, 15-17 June 2016, Almeria, Spain

A model to enhance interaction for people with severe intellectual

disability in healthcare, education and interpreting
Encarnación Postigo Pinazo & Marina Calleja Reina *
Department of Translation and Interpreting, Department of Basic Psychology University of Málaga, Campus de Teatinos, Malaga 29071, Spain

Abstract

ICT tools are powerful instruments of communication which provide equality to those suffering from severe intellectual disability.
We are presenting a model of comprehensive multimodal communication in order to enhance their chances to interact with others
and improve professionals’ understanding of intellectual disability.
Most of the existing literature on different disabilities focuses its attention on people who have some capacities to perform certain
skills to a certain degree. Light and McNaughton (2014) claim that significant support is required to integrate people with severe
or profound intellectual disabilities (SID) into their own communities.
Our model allows effective learning and proactive interaction for both the disabled and for the professionals. Moreover, it offers
resources and a wide range of knowledge about the syndromes and the right strategies to be used.
©©2017
2016TheTheAuthors.
Authors. Published
Published by by Elsevier
Elsevier Ltd.Ltd.
This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).
Peer-review under responsibility of the organizing committee of EDUHEM 2016.
Peer-review under responsibility of the organizing committee of EDUHEM 2016.
Keywords: : ICT tools; severe intellectual disability; communication; multimodality; equality.

1. Background

While ICT tools have been around in the field of healthcare and disability environments for a long time, most of
the efforts have not had the desired effect of achieving a standardize use among all agents involved in the
communication or assistance tasks with the ill or the disabled. EC+ is a research project conceived with the purpose
of filling this gap.

* Corresponding author. Tel.: +34952131841; fax: 34952131841.

E-mail address: epostigo@uma.es, marinac@uma.es

1877-0428 © 2017 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license
(http://creativecommons.org/licenses/by-nc-nd/4.0/).
Peer-review under responsibility of the organizing committee of EDUHEM 2016.
doi:10.1016/j.sbspro.2017.02.188
1190 Encarnación Postigo Pinazo and Marina Calleja Reina / Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195

The great potential of ICT tools will help disabled people to optimize communication and thus increase equality.
Anderson et al (2009: 92) state that technologies must be user-friendly and socially accepted. They also affirm that to
standardize the use of ICT tools, teachers and caregivers must have a positive attitude towards them, as well as a
willingness to learn how to use them, which is not always the case. As Grgurict et al (2015:132) pose, there is no trust
in technologies among many users and besides, those users generally suffer from more than one impairment at the
same time. That is especially true of people affected by rare syndromes, and, hence, severe intellectual disabilities.
Grgurict et al (2015:133) support the advantages of using multimodal interfaces that can address many of the target
group requirements. Therefore, we intend to design user-friendly resources in our research.
Further commitment on the part of professionals is necessary since the number of disabled people is on the increase.
As Quintanilla (2014) states, the situation of this population even in Europe needs urgent attention:
There are more than 80 million people with disabilities in Europe and with the ageing of the population; this
number is likely to increase in the years ahead. Numerous international legal instruments and programmers
of action have been developed. However, the international standards are not reflected in the actual situation
of people with disabilities †(p. 1)
According to research literature, the situation is similar in a global context. According to the American Association
on Intellectual and Developmental Disabilities (AAIDD), intellectual disability implies significant limitations in
intellectual functioning and adaptive behaviour, as expressed in conceptual, social and practical skills. SID subjects
are among the most vulnerable groups. As recent research underlines it is crucial to promote equality for people with
severe intellectual disabilities in healthcare and all paths of life (Crotty & Doody, 2015) and authors such as Agran et
al, (2013) also puts forward that technologies can promote equality by enhancing communication.
However, most of the research on disability focuses on people who have some capacities to perform certain skills
to a certain degree. Thus, Light and McNaughton (2014) underline the importance to focus on the needs of the severely
intellectually impaired:
There is really a need to offer resources for all subjects who have communication needs, but especially there
is a lack of them for those severely intellectually impaired. […] to ensure ease of access for all individuals
who require AAC, and, (d) to maximize AAC solutions to support a wide variety of communication functions ‡
(p. 107).
This claim is also found in the UN Convention on the Rights People with Disabilities§, which emphasizes the need
of support for disabled people to exercise their legal capacity.
Until the 80s, the use of the AAC for this group of people was not even considered. Currently, there are still a
number of obstacles to be overcome, including the barriers to carry out communicative exchanges. Opportunities for
communication for this population can be found in inclusive settings (schools, homes and society), but it is assumed
that the instruction of these subjects, using AAC, is only appropriate in very structured contexts, thus limiting any use
outside of them. This makes it much more difficult to carry out communicative exchanges (Beukelman & Mirenda,
2013: 210).
While there is a strong commitment towards improving communication skills among people with severe intellectual
disability during childhood (Brun et al, 2015), further communication strategies dwindle in adolescence and adulthood
since, according to healthcare staff, therapists and teachers, those patients have reached the maximum of their potential
when it comes to communication skills. This may well be the case in patients with severe syndromes that hinder oral
communication (Camprubí-Sánchez et al, 2006: 2). However, in many cases, some skills in receptive and non-verbal
communication are superior to verbal (Artigas et al, 2005: 7). This will require strategies and a standardized model to
reduce stress and guarantee quality in intervention and care for all subjects with profound or severe intellectual
disabilities. After all, a good many of those patients experience panic or stressful situations due to frustration, since

† http://www.refworld.org/pdfid/55b255374.pdf [Retrieved: 15-5-2016]

‡ http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=21339&lang=en [Retrieved: 15-5-2016]
§http://www.un.org/disabilities/convention/conventionfull.shtml [Retrieved: 14-5-2016]
 Encarnación Postigo Pinazo and Marina Calleja Reina / Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195 1191

they cannot communicate their feelings or desires. Most types of behaviors, which are often considered aggressive,
may be chiefly due to the fact that the patients experience panic when things do not go as planned, or when their
routines are disrupted and thus, these reactions are to be expected. Therefore, according to Jordan (2012, p. 203), it is
advisable to approach aggressive behavior as if it was a form of communication so that it helps us choose a strategy
to encourage conducts that will replace violent behavior.
The use of technology can help disseminate resources and interact with severely impaired people to improve their
basic skills in daily routines and reduce extreme disparities. Successful communication is beneficial both for the
performance of professionals and for the quality of life of the disabled people (Loshkovska & Koceski, 2015).
Therefore, the challenge will be to develop effective, evidence-based, culturally-competent AAC interventions to
support SID subjects in the performance of their communicative competence. This way, they will be able to express
their needs and wants, develop social closeness, exchange information and participate in social routines at home, at
school and work, and improve their interaction in community groups.
Systems, such as Picture Exchange System (PECS) or the materials developed by Makaton Foundation, together
with sign language, have often been valid alternatives for people with profound intellectual disability. However, these
tools may not always be available to professionals when effective communication is at stake.
Reports in databases from the Andalusian Regional Government show that families, who were interviewed,
complained about a lack of communication strategies and resources for communication with people with severe
intellectual disabilities in schools. These claims are mostly rooted in a lack of in-depth knowledge of the different
disabilities and their specific characteristics, together with a lack of specific training on the part of the professionals
and teachers. In this sense, recent research shows how the skills of severely disabled people can be improved with
communication strategies (Fortea et al, 2015, p. 60).

2. Proposal for a communication model

People suffering from severe and profound intellectual disabilities, who are at the highest risk of exclusion, are not
even in a position to ask for sign-language or community interpreters, who can help them use alternative systems, and
cannot usually express their feelings and needs on their own. Instead, they invariably rely on relatives, who might not
have the right skills or be unable to understand what they really need to convey in crucial situations. Although the
Code of Ethics of FEAPs , the confederation for intellectual disabilities in Spain, puts forward the right of intellectually
disabled people to have their own voice heard in situations that concern them, stating that the “disabled people must
be asked and consulted in any matter that affects them” such as health, schooling environments, feelings etc. And, this
is still a claim that cannot always be achieved.
Daily interaction with these subjects is full of unexpected situations that require expertise and communication skills,
especially those situations involving stress and frustration. To overcome these problems satisfactorily, a
comprehensive set of available resources and strategies are needed, together with information on the different needs
in terms of communication and intervention (Gabau et al, 2006).
The model emerges from a multidisciplinary collaboration within the framework of a project to meet SID people’s
needs. EC+ project aims to improve interaction with people with profound and severe intellectual disabilities and the
development of ICT resources and tools. It is a 27-month project, coordinated by the University of Malaga within the
European Commission framework under the 2015 Erasmus + program KA2 in the field of Strategic Partnerships for
Higher Education. The project aims to train students from several disciplines (healthcare, education, psychology,
interpreting and speech therapy) in specialized communication with the disabled and developing a comprehensive
framework of ICT tools to enhance communication with people who are at high risk of total exclusion due to severe
intellectual disability.
What is new in this project is the initiative to join the expertise of different disciplines to enhance communication
for people suffering from severe intellectual disabilities, to empower professionals, facilitate scientific information,
resources and strategies with easy and quick access to all the professionals and caregivers who are involved in the care
and attention of the SID subjects.
1192 Encarnación Postigo Pinazo and Marina Calleja Reina / Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195

Disciplines such as Psychology and Education play a vital role in providing pedagogical approaches to
communication. Drawing on the previous literature on total communication and augmentative communication
(Schaeffer. & Kollinzas, 1980; Torres Monreal and Calleja Reina, 200; Vinales, 2013; Calculator, 2013; Light and
McNaughton, 2014) a comprehensive set of approaches have been taken into consideration, including bimodal
strategies, sign language, pictograms etc.
Medical research on syndromes that hinder communication does provide valuable information on clinical features
that will enable therapists to establish a set of strategies with a view to meeting the general and particular needs of
persons with severe intellectual disability. That is why medical information is crucial for our model (Brun et al, 2011).
Besides, the wide scope of healthcare interpreting includes interacting with different languages and different patients,
and some of those patients are likely to suffer intellectual disabilities due to age, illness, trauma, mental issues or
disability. Therefore, interpreting, being a skill so close to communication and interaction, may involve multimodal
approaches (Bürigh, 2004), (Pascuandrea, 2013) to meet the needs of those patients. These multimodal approaches do
include pictures, pictograms, voice and sign language, which have been traditionally associated with interaction in
disability settings (Ali, 2012; Hilzensauer et al, 2012; Roy & Napier, 2015).

3. Methodology

A systematic review on the existent literature on congenital syndromes and rare diseases which affect
communication was made. A search was carried out in different databases such as Orphanet, Ciberer, Pubmed,
Medline, PsychINFO and WHO fact sheets. A list of syndromes was selected based on a disability scale of indicators
such as Sattler’s assessment scale (2002). The list was validated by geneticists, neurologists and psychologists to
provide resources regarding the health and intervention needs of people with profound intellectual disability and very
poor communicative skills (Hardy et al, 2011), (Muñoz Bravo, 2010).
Scientific guidelines were issued with essential biomedical information about the characteristics of patients who
suffer from the following syndromes: Angelman, Pitt-Hopkins, Mowat-Wilson, Phelan-McDermid, Kleefstra, Rett,
Autism, Usher, West, Lennox, Cornelia de Lange and Dravet. Deafness associated with other intellectual disabilities
and cerebral palsy were also included. These scientific guidelines in five languages (Spanish, Catalan, German, Dutch
and English) are linked to intervention guidelines for therapists and caregivers.
A list of words and phrases for essential communication based on the MacArthur–Bates Communicative
Development Inventories (Fenson et al, 2007) was selected and it was extended according to the feedback of
professionals from 3 daycares centers in Spain and one from Carinthia (Austria). This feedback was based on personal
interviews or surveys on the issue of an initial word list made by researchers of the EC+ project team. The center for
intervention from Parc Tauli was also a source of advice from their professional intervention expertise as reference
intervention team in Spain.
To validate the need for further research on communication and intellectual disability, we chose cluster-sampling
technique for a survey on this issue. We selected three specific groups of professionals from the fields of education,
healthcare and interpreting to gain an insight of their needs. Using a survey by means of the electronic tool Monkey
Survey, questionnaires in English, Spanish and German have been distributed since September 2015 via professional
interpreting, nursery, medical and physiotherapy mass mailing lists. The highest response rate to the survey came from
the healthcare professionals, a 50%, followed by the interpreting professionals, 30% and the education professionals
with a 20% of answer of the total sampling. This also confirms the strong wish of professionals to remain up-to-date.
Since nearly all (96%) respondents welcome the project’s aims as a way of avoiding many communication issues,
And only a 4% claimed they had all the possible knowledge at their disposal to overcome communication needs, a
mobile application, based on our model, has been developed which is based on the API (Application Programming
Interface) version of Android 4.0.3 (Ice Cream Sandwich) so it can be used in most smartphones on the market.
The application includes scientific and intervention information on 15 syndromes and the list of terms (words and
expressions functional communication) which are presented in multimodal format: color images (photos), color
drawing (pictograms) and videos in Spanish, Catalan and Austrian sign language.
The terms are listed alphabetically on the screen, which facilitates the search for the concept with an icon.
 Encarnación Postigo Pinazo and Marina Calleja Reina / Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195 1193

Once a certain concept is selected multiple ways in which the concept can be represented (in order to select the
most appropriate mode for the particular subject) are deployed. This application has the possibility of introducing
graphic elements based on the cognitive demand of the subject.
In addition, all the materials are hosted in an academic portal for training courses online and will be available to
students, professionals and caregivers who wish to improve their skills with open access. Feedback from users will be
asked by means of surveys hosted in the application and pedagogical portal.

4. Discussion

The results of this investigation, both from the existing literature and from analyzing the aforementioned complete
surveys up to the present moment show that the model and the application will be very useful, since there is a gap in
terms of information on rare diseases and syndromes, which hinders effective communicative exchanges. The
suitability of the EC+ application will be evaluated in different centers within the countries of the Consortium.
From the first assessments made of the application by professionals and caregivers of people with severe intellectual
disabilities, the use and dissemination of the EC+ model and mobile application will improve the working conditions
of professionals and caregivers and provide a greater degree of equity to individuals with SID. Communication
resources have been designed not only for teachers, therapists, health workers or interpreters when they meet particular
cases of severe disability but also for the very SID subjects in order to standardize their use in the limited environment
of these subjects and hence to promote equity by improving the quality of their communication exchanges and by
enhancing their basic skills in everyday life. This will certainly reduce extreme disparities and inequality.
The provision of user-friendly ICT tools for target groups may promote a positive move toward their standardized
use and a feeling of trust in technologies among professionals, caregivers and people with severe or profound
intellectual disabilities. The model and tools assemble a large number of both medical and intervention strategies that
is not usually available in an accessible format for professionals and target groups. All those resources are
automatically linked and can be used by means of an intuitive, friendly process. Multimodal tools can be used within
seconds after checking the information by choosing any syndrome in the application so that the process optimizes time
response and reduces the stress of frustration due to communication barriers between the professional and the SID
subjects (Jordan, 2012)
The model is in its initial phase, all materials have now been compiled and the application is already working
satisfactorily. A number of reference experts, who have put the model through its paces, already validate its usefulness
and innovative features. A significant increase in functional communicative exchanges between the professional target
groups and the SID population is expected (Light & McNaughton, 2012).

5. Conclusions

Interaction with disabled people is full of unexpected situations, especially those involving stress and frustration
when there is a lack of effective communication. Those situations require expertise and adequate communication skills.
In addition SID patients are most vulnerable in terms of exclusion, lack of being properly understood and, hence,
inequality is present in their daily activities, which often results in frustration, disruptive behavior and stressful
situations.
We understand that there is a need for providing user-friendly ICT resources for the intervention of SID subjects.
It is true that many professionals feel inequality when working with SID patients and that further training and a positive
approach will impact positively on this perception, turning it into a positive commitment (van der Linde, 2009; Brun,
2011). Therefore, a greater level of satisfaction will also provide equality to professionals, making their work
meaningful to them. Technology makes valuable, reliable and interactive materials available to all stakeholders
involved in the care of SID subjects.
Once those are in place, both professionals (who will consider their task as worthy since they achieve more
understanding and response) and SID patients (who will be able to interact better, will be better understood and will
1194 Encarnación Postigo Pinazo and Marina Calleja Reina / Procedia - Social and Behavioral Sciences 237 (2017) 1189 – 1195

be able to have more empathy towards professionals and relatives in the limited settings in which their lives unfold)
stand to benefit.
The model developed within EC+ project have offers SID population the prospect to familiarize themselves with
the resources that are used by professionals and families by means of user-friendly technologies which also offer them
the opportunity to communicate with their environment more effectively and in a more standardized way. By using
the application, they can attempt to express their feelings and needs with more chances of making themselves
understood and subsequently receiving the right assistance (Artigas et al, 2005; Kober, 2010; Torras-Mañá et al, 2016).
Our model intends to meet the requirements of previous literature findings for the people with severe and profound
intellectual disabilities. Since it is a comprehensive model based on a multimodal approach, it covers a wide range of
disabilities (GrGrguricc et al, 2015, p. 133).

Acknowledgements

The research has been carried out in the framework of the Erasmus+ project EC+: Reference number: 2015-1-
ES01-KA203-015625 “Enhancing communication: research to improve communication for people with special needs
and development of ICT resources and tools “

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