deliverable 2.1 strategy for the creation of the open...

ABLE TO INCLUDE

(GA Nº 621055)

DELIVERABLE 2.1

Strategy for the creation of the open innovation community

Date: 14 July 2015

Version: 1.1

Legal Notice and Disclaimer

The ABLE-TO-INCLUDE project has received funding from the European Union’s ICT Policy Support Programme as part of the Competitiveness and Innovation Framework Programme under Grant Agreement No. 621055. The views and conclusions contained here are those of the authors and should not be interpreted as necessarily representing the official policies or endorsements, either expressed or implied, of the ABLE TO INCLUDE project or the European Commission. The European Commission is not liable for any use that may be made of the information contained therein.

The Members of the ABLE TO INCLUDE Consortium make no warranty of any kind with regard to this document, including, but not limited to, the implied warranties of merchantability and fitness for a particular purpose. The Members of the ABLE TO INCLUDE Consortium shall not be held liable for errors contained herein or direct, indirect, special, incidental or consequential damages in connection with the furnishing, performance, or use of this material.

© ABLE TO INCLUDE Consortium 2014

D2.1 Strategy for the creation of the open innovation community Version 1.1

Document Control

Ref & Title 2.1 Strategy for the creation of the open innovation community

Version 1.1

Date 14 July 2015

Dissemination level Public

Category Report

Document Owner ABLE TO INCLUDE Consortium

Participant Partner(s) ASI, UPF, KUL, TM, IE

Author(s) Jaime Medina, Agustín González Quel

Work Package WP2

Abstract

This deliverable contains the strategy followed for the creation of the open innovation community

Status

Draft

Ready for internal review

WP leader accepted

Project Coordinator accepted

Previous Versions

Version Notes

Version Date Changes made

0.1 03/04/2014 Preliminary version

0.2 30/06/2014 Initial version

0.3 11/07/2014 Reviewed version 1

0.4 18/07/2014 Reviewed version 2

0.5 24/07/2014 Reviewed version def.

1.0 25/07/2014 Final version submitted to the European Commission

1.1 14/07/2015 Updated version with Annex 5.2 Categorization of end users

of 31 © ABLE TO INCLUDE 2014


Table of Contents

Table of Contents ..................................................................................................................................................................... 3 List of Figures ............................................................................................................................................................................ 4 Abbreviations ............................................................................................................................................................................ 5 Executive summary ................................................................................................................................................................... 6 1 Introduction ........................................................................................................................................................................ 7 2 The Open Innovation Methodology ........................................................................................................................... 11

2.1 Identification of stakeholders .............................................................................................................................. 13 2.1.1 Diagnosis of the environment. ..................................................................................................................... 13 2.1.2 Stakeholders map ......................................................................................................................................... 15

2.2 Engagement of stakeholders ............................................................................................................................... 18 2.2.1 Quantitative Test ........................................................................................................................................... 19 2.2.2 Participating groups ..................................................................................................................................... 21

2.2.2.1 Focus Group ........................................................................................................................................... 21 2.2.2.2 Participant observation ....................................................................................................................... 22

2.2.3 Involving communities and organizations ................................................................................................. 22 2.2.4 Website Launch ............................................................................................................................................. 24 2.2.5 Social Networks ............................................................................................................................................. 27

3 Conclusions & Recommendations................................................................................................................................. 29 4 References ....................................................................................................................................................................... 30 5 Annex ............................................................................................................................................................................... 31

5.1 Annex “Producing written information for people with a learning disability” ......................................... 31 5.2 Annex “Categorization of end users”................................................................................................................ 31



List of Figures

Figure 1. Screenshot Simplext ............................................................................................................................................... 7 Figure 2. Screenshot Text2Picto ............................................................................................................................................ 8 Figure 3. Text to Speech open source ................................................................................................................................. 9 Figure 4. Open Innovation process ..................................................................................................................................... 12 Figure 5. Diagnosis of the Project scenario....................................................................................................................... 14 Figure 6. SWOT Analysis ..................................................................................................................................................... 14 Figure 7. Stakeholder’s diagram ........................................................................................................................................ 16 Figure 8. Stakeholder analysis ............................................................................................................................................ 17 Figure 9. Stakeholder’s matrix ............................................................................................................................................ 17 Figure 11. ABLE TO INCLUDE Website Structure ............................................................................................................ 26 Figure 12. Twitter account screenshot ................................................................................................................................ 28



Abbreviations

Acronym Description

ICT Information and communications technology

IDD Intellectual or Developmental Disabilities

UPF Universitat Pompeu Fabra

ASI Ariadna Servicios Informáticos

KU Leuven Katholieke Universiteit Leuven

TM Thomas More Kempen

FP Fundación Prodis

SDK Software Developer Kit

SWOT Strengths, Weakness, Opportunities, Threats

NESSI Networked European Software and Services Initiative

ETP European Technology Platform

eMOV Spanish Technology Platform for Wireless Communications

eVIA Platform of Technologies for Health and Active and Independent Living

WCAG Web Content Accessibility Guide

SW Software

BBT Building Bridges Training



EXECUTIVE SUMMARY

ABLE TO INCLUDE will pave the way to the uptake of innovative ICT solutions for improving the quality of life of the population with IDD by validating its results and success in real pilots involving users and providers in three different relevant countries: Spain, Belgium and United Kingdom. The project will ensure this impact by taking an open-innovation approach. The quickest way to transfer our accessibility layer to the market is making use of open innovation communities. This strategy ensures that the new accessibility layer extends its use rapidly and also that it can be modified and improved by the community, allowing that more and more accessible apps get to the market and the users. The project will steer the creation of a really engaged community of stakeholders and software developers so that after the project concludes, the accessibility layer can be used in applications developed by third parties.



1 INTRODUCTION

The ABLE TO INCLUDE project seeks to improve the social inclusion / independence of people with Intellectual or Developmental Disabilities (IDD). There are many technological tools focused on the inclusion of people with disabilities, but most of them are not accessible to people with intellectual or developmental disabilities, resulting in the exclusion of people with IDD from the information society.

To achieve this, the project will integrate a set of already-developed technologies to create a context-aware accessibility layer that, by being integrated with existing and future ICT tools, can improve the day-to-day life of people with IDD by understanding their surroundings and helping them to interact with the information society. The project focuses on the most important areas that a person needs to live independently and find fulfilment as an individual: to socialize in the context of the web 2.0, to travel independently and be able to work.

Three key technologies will be used as a framework to develop everyday tasks:

Technology 1: Text and content simplifier (Simplext, developed by project partners UPF and ASI)

This system is able to:

− Implement an adaptable and personalised text simplification system that can simplify documents, web pages and web 2.0 content-based on the Simplext methodology.

− Provide built-in easy-reading accessibility and auto-personalization mechanisms in any kind of text (pdf, .doc. html) in the computer, tablet or smart phone (web pages, social networks such as Facebook and apps).

− Integrate and deploy the simplification algorithms as a ubiquitous assistive technology, which “follows” the user in any web social application and from any user device

Figure 1. Screenshot Simplext

Technology 2: A pictogram-text, text-pictogram and pictogram-pictogram translation tool (Text2Picto, developed by project KU Leuven with support from Thomas More Kempen (TM)

This technology provides a text-to-pictogram tool, PictoText, co-developed by partners KU Leuven and TM. This tool provides a text-to-pictogram and a pictogram-to-text translation assuring an intuitive communication between people with and the rest of the society. It also allows translation between different sets of pictograms.

The project ABLE TO INCLUDE will integrate a set of existing technologies to create an open-source and context aware accessibility layer which when integrated with current and future ICT tools, can improve the independence of people with IDD by understanding their personal situations and helping them to interact with the information society



This technology, especially when applied in combination with the text simplification tool, is able to reduce cognitive complexity of tasks such as reading work documents, emails, web pages, chats, etc.

Figure 2. Screenshot Text2Picto

Technology 3: Text-to-speech functionalities (open-source available solutions to be integrated by partner TEAMNET)

One of the simplest strategies to reduce the complexity inherent in decoding text information present in an array of technologies is to incorporate a technology that reads the text out loud. ABLE TO INCLUDE will incorporate this existing technology as another channel that superimposes on the other technologies and improves communication. There are several open-source tools available in the market which performs this function. Specifically, most smart phones’ operating systems come with an easy to implement tool to transform text to speech.



Figure 3. Text to Speech open source

The main objective of ABLE TO INCLUDE is to compose and integrate the mentioned technologies in an accessibility layer providing better access to existing and future ICT tools for people with IDD and to pilot and demonstrate this layer in 3 real life scenarios arranged in 3 main scenarios:

− Leisure within the information society − Mobility − Labour Integration.

Scenario 1: Leisure within the information society

This usage scenario will be applied in three countries (Spain, Belgium and UK) and will be based on mentioned 3 key technologies (text simplification, pictograms translation and text to speech) assuring an intuitive communication between IDD users and the rest of society. It will also allow the possibility of direct interaction or chats among the users.

This pilot will apply the developed accessibility layer to some applications like Facebook, WhatsApp, Twitter, etc. The concept is that messages inserted by the users with IDD in the form of pictograms will be translated to simplified text, voice, or other pictogram-based language, and the messages generated by other users in text will be converted to pictograms, voice or simplified text, according to the preferences of the IDD user.

Scenario 2: Mobility

This usage scenario will be applied in a pilot in Flanders (Belgium) and the UK and will be focused on independent travel of people with IDD through the network of public transports. VPad technology developed by partner TM will be used, complemented by GIS technology from partner TEAMNET and the accessibility layer. Once integrated, the result will be a Smartphone app that is coupled with a web service allowing in parallel:

− To aid the person with IDD during their journey: guidance system with pictograms, voice or simplified text

− To track their location enabling the user with IDD to be located in case they get lost

Scenario 3: Labour integration

This usage scenario will be developed in Madrid (Spain). It will consist of helping people with IDD in their transition from education to the job market. This scenario will be part of the pilot in Spain, and will build on the existing teaching program of partner FP for the work integration of people with IDD.

Simplext will build upon this effort of integration by facilitating the comprehension of texts and thus easing the work tasks assigned. The accessibility layer (including text simplification, pictograms translation and text-to-

The early involvement of the users and stakeholders in the definition of needs and validation of technologies is a key factor for success in the development and following impact of the developed solutions



speech) will be introduced into the routine of the future workers at the preparation taking place at FP to become a real aid for our target group.

The open innovation strategy is a central part of ABLE-TO-INCLUDE. It will focus through a collaborative approach seeing the people with an intellectual disability as equal partners in the development of the accessibility layer, involving, at an early stage, final users, trainers, teachers and applications developers in order to ensure that the outcome of the project is a solution useful for people with IDD and suitable for its integration with existing and future ICT tools.

The ABLE TO INCLUDE accessibility layer will be released as an open source project encouraging the involvement of Open Source communities for obtaining needs and validating the possibilities of integration with current and future applications, aiming at achieving the greatest impact.

Open Innovation strategies and best practices will be applied for the development of this project in parallel with the application of user-centric methodologies for the proper design and validation of the envisaged solution

Accordingly, ABLE TO INCLUDE presents in this deliverable the Open Innovation Strategy to set up in all stages of the project.



2 THE OPEN INNOVATION METHODOLOGY

First of all some definitions of Open Innovation concept and its implications to actual organization and way of work are presented below.

Open innovation is a term promoted by Henry Chesbrough, a professor and executive director at the Center for Open Innovation at the University of California, Berkeley. One of the first definitions of this concept has been: “Open innovation is a paradigm that assumes that firms can and should use external ideas as well as internal ideas, and internal and external paths to market, as the firms look to advance their technology” (Chesbrough, 2003).

The concept has been evolving along the years, so the paradigm and way of work has been changing. Stefan Lindegaard describing the open innovation concept stated “I suggest that you view open innovation as a philosophy or a mindset that you should embrace within your organization. In a more practical definition, open innovation is about bridging internal and external resources and act on those opportunities. The value proposition (better innovation to market faster) this gives companies that get it right is simply too good to miss out on.” (Lindegaard, 2011).

The open innovation paradigm acknowledges that in a world-wide economy, with technologies becoming more and more complex and more difficult to understand and to manage by one single individual or organization, it is necessary to work from a large basis of contributions and to foster collaboration. This same assumption is applied to user centred approaches. User centred innovation implies that the source of the innovation process is a profound understanding of user needs, as well as the ability to translate user knowledge into unique products and experiences (Rosted, 2005). User centric innovation has an important focus on user pull instead of technology push. It promotes the direct involvement of the end-users (consumers or businesses) in the innovation process through observation processes, toolkits and user panels in an open collaborative environment that is flexibly structured (Wise Hansson, n.d.). The involvement of Inclusion Europe as the European network of people with intellectual disabilities and their families will make sure that users participate fully in the innovation process.

Considering this definition, the central idea behind open innovation is that, in a world of widely distributed knowledge, companies cannot afford to rely entirely on their own research, but should instead buy or license processes or inventions (i.e. patents) from other companies. In addition, internal inventions not being used in a firm's business should be taken outside the company (e.g. through licensing, joint ventures or spin-offs). (Chesbrough, 2003).

The open innovation paradigm can be interpreted to go beyond just using external sources of innovation such as users, rival companies, and academic institutions, and can be as much a change in the use, management, and employment of intellectual property as it is in the technical and research driven generation of intellectual property. In this sense, it is understood as the systematic encouragement and exploration of a wide range of internal and external sources for innovative opportunities, the integration of this exploration with firm capabilities and resources, and the exploitation of these opportunities through multiple channels. (West, 2006).

In this context, ABLE TO INCLUDE partners will develop every task in the project considering an open innovation background. So, as mentioned, the most important result of the project will be the accessibility layer and the open source Software Developer Kit (SDK) that will foster the introduction of a communications accessibility layer for people with IDD in any software development, ensuring that the solution is sustainable in the long-term. The model is based on open source and open innovation, and its success will depend on the ability to create an active community around this project, so that the accessibility layer may be used by hundreds of software developers, to make their existing and future applications accessible. This philosophy will also allow the open community to improve the accessibility layer and adapt it to future needs or restrictions.

The first objective of ABLE TO INCLUDE is to implement a user-driven open innovation methodology. Selection of adequate stakeholders and keep them engaged in the project will be necessary. The ABLE TO INCLUDE project aims to develop a context aware accessibility layer based on developed components that, by being



integrated with existing and future ICT tools can improve the daily tasks of people with IDD and help them interact with the information society.

This objective makes user-driven innovation the best option to develop a new project based on stakeholder opinions and experiences. End-users will decide which new innovative layer characteristics are interesting and useful.

One of the main objectives of the project is based on achieving quicker transfer of innovative solutions developed to market. The best way to reach that is by taking an open-innovation approach. The consortium believes that the quickest way to transfer our accessibility layer to the market is through open innovation communities. This strategy ensures that the new accessibility layer extends its use rapidly and also that it can be modified and improved by the community, allowing that more and more accessible apps get to the market and the users.

Accordingly, one of the first tasks to be executed in this project, is to establish the open innovation methodology that make the essential background for all upcoming activities. This work is included on Task 2.1. Establishment and coordination of the open innovation process (Task leader ASI). This task is defining the strategy for the creation of an open innovation community around the development of the accessibility layer. This strategy takes into account the several actions:

− Definition of strategies for open innovation communities’ involvement. − Dissemination for involvement strategy − Identify social networks and platforms − Demonstration tools − Participation on community forums.

This task includes also the coordination of the open innovation structure and community working closely with task 2.2 that will implement the efforts for successfully involving communities of software development.

As shown below, a global graphic has been defined. It shows the open innovation process proposed, which links the main stages set in the Open Innovation Strategy.

Figure 4. Open Innovation process

In the first stage, I. Identification of Stakeholders, different tools will be used to identify, analyse and select every stakeholder involved in all project areas.



In the second stage, II. Engagement of Stakeholders the aim will be to engage the stakeholders so the partners can use their input in order to develop next stages accordingly. In this stage, some helpful tools have been chosen, in each of them the participation of final users will be required. The selected tools are: quantitative test, focus group, website launch, social networks and SW development communities ‘engagement.

The third and last stage is defined as III. Involving stakeholders on pilots. Its goal is to involve final users in the co-design of the pilots’ development stage, so that technical partners are able to develop the most useful accessibility layer for them.

2.1 IDENTIFICATION OF STAKEHOLDERS

In today’s society it is becoming increasingly important to be able to use the current available technological tools in order to reach our objectives. Although in past years there have been multiple and successful progress on inclusion of people with intellectual or developmental disabilities (IDD), the continuous progresses made in new technologies, especially on ICT solutions, have made it impossible to adapt them to this type of users.

For example, the number of mobile apps is growing exponentially but very few are really accessible to people with IDD. Now, SW developers do not consider accessibility as a priority in their developments. This scenario further excludes people with IDD from the Information Society.

2.1.1 Diagnosis of the environment.

In this stage, the consortium will determine the current situation about new technologies and how they are adapted to IDD people. It will be very important to have an in-depth kind of technologies is understanding of how current technology is meeting the needs of people with a learning disability. At the end of this phase we will be able to answer:

− Are there similar technological solutions? If yes, are they helpful for our project?

− Is there any technological gap that we can fill in with these developments?

− What is the real technical need we should cover with our ABLE TO INCLUDE developments?

In the next figure we see two big areas that interact between each other. One of them reflects the environment. In it we can find some of the agents involved around the developments that the project proposes. On the other side we find the project, where we can see different tools chosen on the open innovation methodology.

Open Innovation strategies and best practices will be applied for the development of this project in parallel with the application of user-centric methodologies for the proper design and validation of the envisaged solution



Figure 5. Diagnosis of the Project scenario

One of the main task to be done in this stage is to perform a complete SWOT (Strengths, Weakness, Opportunities, Threats) analysis to identify the potential of the proposed ABLE TO INCLUDE solution, showing that the wider deployment and use is possible if the required steps are brought about during the project.

In the proposal stage previous work has been done. A SWOT analysis is included, which is the basis to identify the Strengths, Weaknesses, Opportunities and Threats.

Figure 6. SWOT Analysis



Additionally on ICT projects it is essential to analyse the medium and long term of all the technologies involved. As a sector of continuous evolution, it is important to think about what the future needs of ICT technologies will be.

Accordingly ABLE TO INCLUDE will develop some work in this stage to provide answers to:

− Where are we going to? − What are we going to face in three years from now? − Will the needs detected now be the same some years from now? − How can we develop the project to cover future demands? − Are new technologies/IT services going to appear that could influence the project goals?

2.1.2 Stakeholders map

In this stage the consortium will identify the individuals or groups that are likely to affect or be affected by the ABLE TO INCLUDE project, sorting them according to their impact on the action and the impact the action will have on them.

A stakeholder is any person or organization, who can be positively or negatively impacted by, or cause an impact on the actions of a company, government, or organization. We will define three types of stakeholders involving ABLE TO INCLUDE activities:

− Primary stakeholders: are those ultimately affected, either positively or negatively by ABLE TO INCLUDE actions.

− Secondary stakeholders: are the ‘intermediaries’, that is, persons or organizations who are indirectly affected by ABLE TO INCLUDE actions.

− Key stakeholders: (who can also belong to the first two groups) have significant influence upon or importance to the project.

This information will be used to assess how the interests of those stakeholders should be addressed in a project plan, policy, program, or other action. Stakeholder analysis is a key part of stakeholder management.

In this stage we should determine the real situation according the environment around the project.



Figure 7. Stakeholder’s diagram

Once we have identified a list of stakeholders, further analysis will be useful to better understand their relevance and the perspective they offer, to understand their relationship to the issue(s) and each other, and to prioritize based on their relative usefulness for this engagement.

A list of criteria is presented next to help the analysis to each identified stakeholder:

− Contribution: Does the stakeholder have information, counsel, or expertise on the issue that could be helpful to the project?

− Legitimacy: How legitimate is the stakeholder’s claim for engagement? − Willingness to engage: How willing is the stakeholder to engage? − Influence: How much influence does the stakeholder have? − Necessity of involvement: Is this someone who could derail or delegitimize the process if they were not

included in the engagement? − Action: we will use these five criteria to create and populate a chart with short descriptions of how

stakeholders fulfil them. Next, we will assign values (low, medium, or high) to these stakeholders. This first dataset will help us later to decide which stakeholders to engage. See example that follows.



STAKEHOLDER CONTRIBUTION LEGITIMACY WILLINGNESS TO ENGAGE

INFLUENCE NECESSITY OF INVOLVEMENT

Stakeholder 1 High: knowledge in X issue is of value to the company

High: directly affected by company’s activity

High: proactive group that is already engaging

Low: relatively unknown group

Low: not an outspoken stakeholder

Stakeholder 2 Medium Medium High Medium Medium

Stakeholder 3 High High Medium High Medium

Stakeholder 4 Low Medium Low Medium Low

Figure 8. Stakeholder analysis

To complement this task a mapping of stakeholders will be developed, which is a visual exercise and analysis tool that we can use to

− Further determine which stakeholders are most useful to engage with − Allows us to see where stakeholders stand when evaluated by the same key − Criteria and compared to each other and helps us to visualize the often complex − Interplay of issues and relationships created in the criteria chart above.

Also a mapping as follows will be drawn to identify key stakeholders.

1. Drawing a quadrant using two axes labelled “Low” to “High” 2. Adding “Influence/Power of stakeholders”, “Interest of stakeholders” to the criteria chart as above 3. Assigning “Influence/Power of stakeholders” to the Y-axis and “Interest of stakeholders” to the X-axis 4. Discussing and debating where each stakeholder falls 5. Plotting the stakeholders on the grid 6. To illustrate relationships, using arrows to depict “Influence”

Figure 9. Stakeholder’s matrix



In this four square matrix, we can distinguish four different types of stakeholders. Next to each type is presented a possible action that could be followed to engage them:

- KEY STAKEHOLDER. High influence and high interest

o Key player focus effort on this group

o Involve in governance/decision making bodies

o Engage and consult regularly

- PRIMARY STAKEHOLDER. Meet their needs. High influence and low interest

o Engage and consult on interest area

o Try to increase level of interest

o Aim to move into right hand box

- PRIMARY STAKEHOLDER. Show consideration. Low influence and high interest

o Make use of interest through involvement in low risk areas

o Keep informed and consult on interest area

o Potential supporter/goodwill ambassador

- LOW PRIORITY STAKEHOLDER. Least important. Low influence and low interest

o Inform via general communications: newsletters, website, mail shots

o Aim to move into right hand box

2.2 ENGAGEMENT OF STAKEHOLDERS

Once the stakeholders are identified, the next step is to engage them. It is not practical and usually not necessary to engage with all stakeholder groups with the same level of intensity all of the time. Being strategic and clear about whom are we engaging with and why, before jumping in, can help save both time and efforts.

ABLE TO INCLUDE will look closely at stakeholder issues and decide whether they are material to our engagement objectives, asking ourselves the following questions:

− What are the issues for these priority stakeholders? − Which issues do all stakeholders most frequently express? − Are the real issues apparent and relevant to our engagement objectives

In Stakeholders engagement the channels to be used will need to be selected and adapted accordingly. A preliminary list of activities for stakeholders’ involvement is provided:

− Working groups: groups with responsibility/interest for specific aspects of the project services, e.g. assessing community needs and priorities.

− Surveys: provide an opportunity to reach very large segments of the community. − Steering or advisory committees: groups that guide the work of the initiative. − Newsletters: provide a mechanism for keeping stakeholders informed; they should include a feedback

mechanism. The ABLE TO INCLUDE website can be a relevant channel for centralizing the emission of newsletters and the reception of stakeholders’ feedback

− Personal meetings: may be used by pilot/services leader to engage opinion leaders from stakeholders to engage its whole community.

− Use the power of social networks as a way to get to the users and keep them posted. − Promotion: any kind of advertisement.



In this stage, five main tools have been defined in order to engage as better as possible stakeholders. Each of this tools is presented below.

2.2.1 Quantitative Test

One of the main tools to develop in a Quantitative test is the Questionnaire. It is the most commonly used method of gathering information because it is the less costly way to reach more people, including people at some distance. Depending upon the method of distribution, it can be swiftly done and data analysis can begin right away. The questionnaire keeps away from interviewer bias, guiding and cues that can impact the legitimacy and reliability of the data collection.

This questionnaires come in many different forms from: factual to opinion based, from tick boxes to free text responses. Whatever their form, questionnaires are often viewed as quick and easy to do. To get useful responses, in a cost-effective way, it is important to be clear about the aim of the questionnaire and how the responses will help us to improve the learning technology or its implementation. Think also about the analysis of results. It can be sobering to consider the amount of data we will generate and the time it will take to analyse.

The advantages of questionnaires

− Practical − Large amounts of information can be collected from a large number of people in a short period of time

and in a relatively cost effective way − Can be carried out by the researcher or by any number of people with limited affect to its validity and

reliability − The results of the questionnaires can usually be quickly and easily quantified by either a researcher or

through the use of a software package − Can be analysed more 'scientifically' and objectively than other forms of research − When data has been quantified, it can be used to compare and contrast other research and may be

used to measure change − Positivists believe that quantitative data can be used to create new theories and / or test existing

hypotheses

The disadvantages of questionnaires

− Is argued to be inadequate to understand some forms of information - i.e. changes of emotions, behaviour, feelings etc.

− Phenomenologists state that quantitative research is simply an artificial creation by the researcher, as it is asking only a limited amount of information without explanation

− Lacks validity − There is no way to tell how truthful a respondent is being − There is no way of telling how much thought a respondent has put in − The respondent may be forgetful or not thinking within the full context of the situation − People may read differently into each question and therefore reply based on their own interpretation

of the question − There is a level of researcher imposition, meaning that when developing the questionnaire, the

researcher is making their own decisions and assumptions as to what is and is not important...therefore they may be missing something that is of importance

In ABLE TO INCLUDE, we will use questionnaires focused on different stakeholders around the project. We will try to minimize stated disadvantages to make them as helpful as possible.



Initially two different types of questionnaires are planned according the stakeholder involved in:

- Questionnaire for family and relatives, trainers and care-givers - Questionnaire for final users

o Adapted to mobility pilot o Adapted to leisure pilot o Adapted to labour integration pilot

ABLE TO INCLUDE has started to develop questionnaires in order to reach the required quality. The aim is to make easily understandable questionnaires that are easy to fill in. Some examples of already completed work are presented below.

Each of the partners will decide the way to pilot these questionnaires. Some of them will distribute them by e-mail attaching a Word document; other ones will make a Google form and send a link to the participants so they could fill the questionnaire in online.

As agreed with the consortium, the roadmap to follow for this stage is the next one:

1st step (April-June 14)

− General questionnaire for professionals and family, trainers and care givers

2nd step (September-October 14)

Specific questionnaires for Users:

− One questionnaire adapted to BBT people (including Leisure & Mobility questions) − One questionnaire adapted to TM people (including Leisure & Mobility questions) − One questionnaire adapted to FP people (including Leisure & Labour Integration questions)

One of the main challenges in engaging people with a learning disability in question is to ensure there is an appropriate research design, which includes that all written materials are produced in an accessible format.

It is also important to consider research ethics when working with vulnerable research respondents, including informed consent, anonymity, confidentiality etc.

In the pilot stages with people with a learning disability the researchers will be trained to interview persons with IDD, so it is important to follow some good practice such as: read the question slowly and clearly, not to lead the participants, take extra time, establish clear ground rules etc.

Therefore we will ensure the design of all written materials is appropriatefor people with a learning disability, such as

− Use of images − Font − Content − Spacing

The reader is referred to Annex “Producing written information for people with a learning disability”. This annex will be taken into account for producing all documents for people with a learning disability involved in Able to Include.



2.2.2 Participating groups

2.2.2.1 Focus Group

The mostly widely used qualitative tool is the focus group. A focus group is the meeting of a small group of individuals who are guided through a discussion by a trained moderator (or consultant). The goal of the focus group is to get beyond superficial answers and uncover insights on consumer attitudes and behaviour.

In this project some of the partners with easier access to the potential users will arrange focus groups, in which the participants are going to be carefully screened and recruited to ensure that they are part of the relevant target market.

A focus group with 4-5 members in the group will be undertaken in quick sessions of one hour. A moderator will guide the group through a discussion that probes attitudes about a final product of this project, the accessibility layer in this case. Due to the type of intended users, people with intellectual disabilities, the discussion will be loosely structured, and the moderator will try to get a free flow of ideas.

Focus groups are frequently used because they foster valuable group dynamics that can be observed live by users and because they are cost-effective. However, it is important to determine if and when the focus group is the appropriate type of qualitative research to use. For instance, focus groups are often used during the exploratory phase of product development, like this case. This is before developments have been put into action, and the consortium wants initial opinions and reactions to a product prior to market launch.

In this project, this tool is planned to be essential in two ways:

It is an important tool for acquiring feedback regarding new products, as well as various topics. In marketing, focus groups are usually used in the early stages of product or concept development, when organizations are trying to create an overall direction for a marketing initiative. In particular, these focus groups will allow the consortium to develop, package, name, or test market a new accessibility layer, to discuss, view, and/or test the new product before it is made available to the public. This can provide valuable information about the potential market acceptance of the product.

On the other hand in terms of usability engineering, this focus group will help us to collect the views of users on a software or website. This marketing method can be applied to computer products to better understand the motivations of users and their perception of the product, as we will do in this case. Unlike other methods of ergonomics, a focus group implies several participants: users or future users of the application. The focus group can only collect subjective data, not objective data on the use of the application as the usability test for example.

Focus group data analysis

The analysis of focus group data presents both challenges and opportunities when compared to other types of qualitative data. Some authors have suggested that data should be analysed in the same manner as interview data, while others have suggested that the unique features of focus group data - particularly the opportunity that it provides to observe interactions between group members - means that distinctive forms of analysis should be used. Data analysis can take place at the level of the individual or the group.

Focus group data provides the opportunity to analyse the strength with which an individual holds an opinion. If they are presented with opposing opinions or directly challenged, the individual may either modify their position or defend it. Bringing together all the comments that an individual makes in order can enable the researcher to determine whether their view changes in the course of discussion and, if so, further examination of the transcript may reveal which contributions by other focus group members brought about the change.

At the collective level, focus group data can sometimes reveal shared understandings or common views. However, there is a danger that a consensus can be assumed when not every person has spoken: the researcher



will need to consider carefully whether the people who have not expressed a view can be assumed to agree with the majority, or whether they may simply be unwilling to voice their disagreement. (Harding, 2013).

ABLE TO INCLUDE will do some focus groups with different targeted users. This stage is planned to start in September 2014.

2.2.2.2 Participant observation

ABLE TO INCLUDE will consider the possibility to start some sessions of participant observation.

Participant observation is a qualitative method with roots in traditional ethnographic research, whose objective is to help researchers learn the perspectives held by study populations. As qualitative researchers, we presume that there will be multiple perspectives in this particular community, people with IDD.

Data obtained through participant observation will serve as a check against participants’ subjective reporting of what they do and how they act. Participant observation is also useful for gaining an understanding of the technological usage contexts in which study participants live; the relationships among and between people, contexts, ideas, norms, and events; and people’s behaviours and activities – what they do, how frequently, and with whom.

Researchers conducting participant observation need to be prepared and willing to adapt to a variety of uncontrolled situations and settings. How much we actively participate in activities versus observe them depends on the objectives, on the group and personal circumstances, and on the ability to blend in with the study population.

The specific responsibilities will include:

− Observing people as they engage in activities that would probably occur in much the same way if you were not present

− Engaging to some extent in the activities taking place, either in order to better understand the local perspective or so as not to call attention

− Interacting with people socially outside of a controlled research environment, such as at a bar, public meeting place, bus depot, religious gathering, or market – if casual conversation gives way to more substantive discussion of the research topic. The identity, affiliation, and purpose should be disclosed

− Identifying and developing relationships with key informants, stakeholders, and gatekeepers

2.2.3 Involving communities and organizations

ABLE TO INCLUDE considers it essential to reach and interact with open source communities. In order to reach those, ABLE TO INCLUDE will be involved in general open source communities such as those created around GitHub and SourceForge repositories through a continuous presence in its forum and social networks. ABLE TO INCLUDE will reach open source developers also by interacting with CMS Communities such as Joomla, Drupal and Wordpress.

The strategies that ABLE TO INCLUDE will follow for the involvement of software developers will address two levels of applications coders:

- Those who programme applications for personal motivations - and those working in software companies.

Part of the strategy for the involvement of OS developers will be the participation of the consortium in the development of projects and applications carried out by developers in the Community so we can facilitate the further integration of the ABLE TO INCLUDE accessibility layer with these applications. With this strategy we will manage to enrich the requirements for the accessibility layer at the same time that we create awareness and interest of the communities in the ABLE TO INCLUDE project. We will be involved in the development of useful applications for people with intellectual disabilities that can benefit from the integration of the



accessibility layer. This strategy suits the usual code of behaviour in Open Source Communities where people are valued for their contribution and commitment with the community.

In order to involve software companies, we will use Networked European Software and Services Initiative (NESSI) to reach several European Software development companies that may be interested in the results of the project and, therefore, in collaborating with us. NESSI is the European Technology Platform (ETP) dedicated to Software and Services, but, at the same time, several countries have their own national ETPs. For instance, in Spain three ETPs exist that will facilitate the involvement of software application developers: INES (Spanish NESSI’s counterpart), eMOV (Spanish Technology Platform for Wireless Communications) and eVIA (Platform of Technologies for Health and Active and Independent Living).

Another incentive for software companies to be involved in the project is that we will provide a competitive way to create accessible applications for intellectually disabled people. Driven by emerging National Legislation such as the British Equality Act that reinforce and simplify no-discrimination laws, software companies may be required to produce applications fully accessible and ABLE TO INCLUDE will provide a competitive way to achieve this.

In particular, collaboration with some similar projects may lead to interesting results. For example, collaboration with the Blue Assist project (http://www.blueassist.eu/) may allow the integration of the panic button functionalities into the libraries composing the accessibility layer in the ABLE TO INCLUDE project, allowing this functionality to be widely available for its integration with other applications. The AEGIS project had a very similar objective to the ABLE TO INCLUDE project. The difference is that AEGIS worked on the development of applications and / or software components for building accessible applications from scratch instead of building software components and libraries for making existing and future applications accessible. ABLE TO INCLUDE will take into consideration the experience of the AEGIS project and will take advantage of any transfer of results among the two projects.

The POSEiDON project (http://www.poseidon-project.org/) is also similar to ABLE TO INCLUDE. This project’s main objective is to increase the inclusion of people with Down’s syndrome specifically, while ABLE TO INCLUDE’s focus is on IDD people in general. POSEiDON will also create smart environments which can intelligently provide support to people with Down’s syndrome at different stages of daily life and provide personalised solutions that maximizes people with Down’s syndrome’s strengths and allows adaptation to each individual.

ABLE TO INCLUDE may benefit from collaboration with the PorSimples project by simplifying the aggregation of Portuguese as a language for the accessibility layer.

Collaboration with the AMI4INCLUSION project may lead to the generation of new accessible applications for the work inclusion of people with intellectual disabilities by the integration of the accessibility layer.

Collaboration with the INNOSERV, ATIS4ALL and ETNA projects will be particularly useful for reaching potential users and committed stakeholders.

In the case of the INNOSERV, ETNA and ATIS4ALL projects that have deployed different kinds of networks on accessibility issues, ABLE TO INCLUDE intends to collaborate by an active participation in the networks, keeping track of their activity and members, and providing visibility to the actions and results of our project.

Concrete actions

− We will analyse all the results and software generated by the AEGIS project. We will contact the coordinator and consortium so we can be aware of any further work in the topic carried out as a continuation of the project.

− We will contact the coordinator and consortium PorSimples and Ami4Inclusion project so we can establish further collaboration on the second stage of the project, when ABLE TO INCLUDE will be able to release a first version of the accessibility layer capable of improving (and be improved by) these projects.


http://www.blueassist.eu/

http://www.poseidon-project.org/


− We will integrate the functionality of the Blue Assist project in our accessibility layer. For this purpose, the Belgium Pilot will contact the coordinator of the project so we can propose to work together in this integration.

In all cases, communities around these projects will be invited to attend our dissemination events so future collaboration can be established.

2.2.4 Website Launch

These days, almost any small business or project should have a website. With costs being extremely low at the entry level, it is becoming difficult to imagine a reason for any company of any size not to have a website. Many user-friendly, free and open-source content-management systems are available to assist with Web design, so it is even possible to build a basic small business website without a professional Web designer.

In this context, ABLE TO INCLUDE partners will launch a project website as soon as possible, making possible to take advantage to following benefits:

Accessibility

A website is online and accessible 24 hours a day, every day of the year. Because of this, our users and potential users can visit our site for support or information about our accessibility layer and its pilots whenever it is convenient for them. Our website will act as an invaluable and always-available resource for information which would otherwise only be accessible during our project time and after.

Nerve center for the global economy

The Internet has become the nerve center for the global economy. Many world leaders are realizing that those organizations will thrive in this global Internet economy who will grasp its importance before their competitors do. A well-designed website is not only an Internet identity for our project, it is an essential part of the success and future of it.

Create a product showcase

It is essential to provide photos and detailed descriptions of our accessibility layer and its pilots, explain why this accessibility layer is different to present solutions, and show how it can help people in their personal or professional lives.

Reach new markets with a global audience

Internet is the most cost effective way to trade nationally and internationally. This website will broaden our base of users, members, distributors or suppliers. We can reach more potential users for our future project without doing additional marketing.

User feedback

We can gather information about our existing and potential users by using online forms and surveys. Provide a feedback form to make it easy for our users to send their input. Conduct surveys to find out how we can improve the accessibility layer to develop. Our site statistics can also help us to understand how the visitors and users use the site.

Worldwide exposure

Increasing visibility is one major factor that makes having a website important. Even if people have heard about present project, they may want to carry out research online first, before leaving the house. Provide a map and directions of consortium partners on the website so that visitors are likely to contact us.



ABLE TO INCLUDE will develop a complete website that helps the interaction of every stakeholder of the project. The aim is to create a website that make possible the consortium to collect information and data of the visitor at the same time they get information of the project.

At this respect we will upload all interest document for users and stakeholders, e.g. the questionnaires will be uploaded so we can have some external contribution to the project.

One key point is being consistent on what we preach. In this sense the website will be adapted to fulfil accessibility level Web Content Accessibility Guidelines WCAG.

WCAG is developed through the W3C process in cooperation with individuals and organizations around the world, with a goal of proving a single shared standard for web content accessibility that meets the needs of individuals, organizations, and governments internationally.

The WCAG documents explain how to make web content more accessible to people with disabilities. Web "content" generally refers to the information in a web page or web application, including:

− natural information such as text, images, and sounds − code or markup that defines structure, presentation, etc.

We present a screenshot of preliminary works done on website development.



Figure 10. ABLE TO INCLUDE Website Structure



2.2.5 Social Networks

Social media networks were a novelty 5 years ago, but today their importance is no longer debated. Businesses have definitely realized the power of social media and accepted that social media marketing has to be part of their marketing and public relation mix.

As published in 2013 Social Media Marketing Report (Stelzner, May 2013), the importance of social networks is shown in next data and statements:

− Marketers place very high value on social media: A significant 86% of marketers indicate that social media is important for their business, up from 83% in 2012.

− Tactics and engagement are top areas marketers want to master: At least 88% of marketers want to know the most effective social tactics and the best ways to engage their audience with social media.

− YouTube holds the top spot for future plans: A significant 69% of marketers plan on increasing their use of YouTube, making it the top area marketers will invest in for 2013.

− Marketers want to learn most about blogging: While 58% of marketers are blogging, 62% want to learn more about it and 66% plan on increasing blogging activities in 2013.

− Podcasting set to explode in 2013: Only 5% of marketers are involved with podcasting, yet 24% plan on increasing their podcasting activities in 2013— almost a five-fold increase—and 32% of marketers want to learn more about it.

− Facebook and LinkedIn are the two most important social networks for marketers. When forced to only select one platform, 49% of marketers selected Facebook, followed by LinkedIn at 16%.

− Most marketers are not sure their Facebook marketing is effective: Only 37% of marketers (slightly more than one in three) think that their Facebook efforts are effective.

− Increased exposure is the top benefit of social media marketing: A significant 89% of marketers stated that increased exposure was the number one benefit of social media marketing.

In this scenario ABLE TO INCLUDE, as an ICT project, consider extremely important to position itself in social networking, to reach all potential stakeholders that could be involved or benefited by project developments. Accordingly following social media strategy has been set up:

Step 1. Set goals and objectives

Step 2. Determine the metrics

Step 3. Determine the audience (SW Companies, IDD-support oriented organizations, Public authorities, etc.)

Step 4. Select the right platforms

Step 5. Gather resources and determine roles

Step 6. Create Content

Activity in social networks is essential to provide the project the most visibility. Different kind of social networks will be afford, however initially the effort will be focus on the Twitter account. In this context we have launched the project twitter account @abletoinclude where regularly news and events will be posted.



Figure 11. Twitter account screenshot



3 CONCLUSIONS & RECOMMENDATIONS

Our conclusions and recommendations:

− The open innovation strategy is a central part of ABLE-TO-INCLUDE. Open Innovation strategies and best practices will be applied for the development of this project in parallel with the application of user-centric methodologies for the proper design and validation of the envisaged solution.

− Open innovation will be achieved through a collaborative approach seeing the people with an intellectual disability as equal partners in the development of the accessibility layer.

− Involving of final users, trainers, teachers and applications developers is essential in order to ensure that the outcome of the project is a solution useful for people with IDD and suitable for its integration with existing and future ICT tools.

− The accessibility layer will be released as an open source project, encouraging the involvement of Open Source communities for obtaining needs and validating the possibilities of integration with current and future applications, aiming at achieving the greatest impact.

− The early involvement of the users and stakeholders in the definition of needs and validation of technologies is a key factor for success in the development and following impact of the developed solutions.

− A diagnosis of the environment will be done, with the aim to determine the actual scenario around new technologies and how they are adapted to IDD people. It will be very important to know perfectly what the real state of the art in this kind of technologies is.

− The stakeholders map will help to identify the individuals or groups that are likely to affect or be affected by ABLE TO INCLUDE, and sorting them according to their impact on the action and the impact the action will have on them.

− Questionnaires will be used to obtain useful information of users, their family and care givers.

− Some focus group will be undertaken with the goal of getting beyond superficial answers and uncover insights on consumer attitudes and behaviour.

− Sessions of participant observation will be considered to be done. The aim will be to get some data related to what IDD people do and how they act.

− ABLE TO INCLUDE considers essential to reach and interact with open source communities. In order to reach those, general open source and software developer’s communities will be involved.

− A complete website will be developed, to help the interaction of every stakeholder of the project. The aim is to create a website that make possible the consortium to collect information and data of the visitor at the same time they get information of the project.

− ABLE TO INCLUDE, as an ICT project, consider extremely important to position itself in social networking, to reach all potential stakeholders that could be involved or benefited by project developments. At this point the activity in social network will be continuous and dynamic.



4 REFERENCES

Chesbrough, H. W. (2003). The era of open innovation. Massachusetts: MIT Sloan Management Review 44: 35–41.

Harding, J. (2013). Qualitative Data Analysis from Start to Finish. London: SAGE Publishers.

Lindegaard, S. (2011). Making Innovation Work. North Charleston. SC: Create Space.

Rosted, J. (2005). User driven innovation, results and recommendations. www.foranet.dk.

Stelzner, M. A. (May 2013). 2013 Social Media Marketing industry Report.

West, J. G. (2006). Challenges of open innovation: The paradox of firm investment in open-source software. R and D Management 36: 319.

Wise Hansson, E. (n.d.). Understanding user-driven innovation TemaNord. www.norden.org/publications.



5 ANNEX

5.1 ANNEX “PRODUCING WRITTEN INFORMATION FOR PEOPLE WITH A LEARNING DISABILITY”

5.2 ANNEX “CATEGORIZATION OF END USERS”


Producingwritten information forpeople with a learning disability

www.building-bridges-training.org Community Interest Company 6916509

Simple clear design – not clutteredWell-spaced between lines and paragraphsJustify text to the left not across the page as this can stretch some wordsAvoid splitting words at the end of linesTry not to use 2 columns on a page, or if you do, use a border and make plenty of space between each columnUse matt rather than glossy or re�ective paperUse good quality paper so the ink from the other side does not show throughMake a good contrast with colours; black type on white or yellow paper is the best contrastAvoid putting text over images such as photosFor longer documents use a colour-coded content list, e.g. make the edges of the page a coloured border

Design

Use of imagesUse pictures, photos and clip art to add meaning to the text, but ensure images add clarity to the text and are not just for decoration. Ask your-self – do they make the subject of the material clear to a non-reader?If you are not sure, show it to people without the text and ask them what they think it meansMake sure the images used are appropriate to the age and ethnicity of the people getting the informationMake sure consent has been obtained for any photos used

FontUse minimum size 14 but ideally size 16Avoid using text in italics or underlinedUse sentence case – DON’T WRITE IN CAPITALSUse a clear sans serif type font like Arial rather than Times New RomanDon’t use fancy letters and fontsCheck how the letters ‘a‘and ‘g’ (Calibri) appear on the font you useSome people think comic sans looks childish

1



Content

Use short sentences of 15 to 20 wordsKeep to one main idea in each sentenceBreak long sentences where there is an 'and' or ‘but', into two sentences Put information into a logical sequence. To avoid confusion limit the use of pronouns e.g. if, they - instead repeat the noun more oftenUse the personal pronouns e.g. 'I' 'we' 'you' to help the reader identify withthe content e.g. when you get to the building go to the reception. I will come and meet you thereAvoid jargon and acronyms (abbreviations), but if it is essential, includean explanation Use bullet points rather than long textTry and keep all the text about one thing on the same page, rather than letting it run onto the next pageUse story boxes and fact boxes to make the main points clear Contact details should include a phone number and not just anemail addressAvoid long complicated words – use easy short onese.g. ‘use’ rather than ‘utilise’Put important words such as the date in bold so they stand out When you have written the letter or information, read it again and cut out all the irrelevant information and surplus wordsMake the verbs in the sentence active not passive i.e. ‘the students hand their work in on time’ and not ‘the work is handed in on time by the students’ remember ‘the cat sat on the mat’!Keep punctuation to a minimum, and avoid semicolons (;) colons (:) and hyphens (-) Be consistent even if it makes the text seem boring e.g. use ‘the trusteemeeting’ and don’t change it later to ‘the committee’ or ‘the board’. Use the number and not the word, e.g. use ‘3’ not ‘three’Avoid use of negativesWrite numbers as numbers not words

2



Letters

Involve your audience

3

Use a photo of the venueUse a photo of yourself by your signaturePrint your name in full as well as signing itIf your letter is about an appointment, put the date asMonday 17th September 2012, not 17.9.12If you need to put the time, add a clock showing the correct timeA useful site is:http://www.havefunteaching.com/flash-cards/math/time-flash-cards.pdfThere is a clock for each quarter hour and they can be re-sizedGive information about travel, e.g. bus numbers, ring-and-ride or ataxi firm telephone numberGive a map and directions with local landmarks, e.g. next to thePink Elephant pub.

Include people with a learning disability in the design processIf possible, test out the information by asking other people with a learning disability who have not seen the information before, to get their feedback

Using images in Microsoft WordUnlike Microsoft PowerPoint you can’t click and drag images in aWord document.An easy way to get round this is to insert a table. Then you can write the text and paste images where you want them. You can add rows and columns and alter the column widths. When you have finished the document, delete the gridlines by choosing ‘no border’ in the drop-down borders options.

CATEGORIZATION OF END USERS

1 DEFINITIONS Note: In present document the term Learning Disability can be considered analogue to Intellectual Disability.

From the American Association on Intellectual and Developmental Disabilities (AAIDD)

The American Association on Intellectual and Developmental Disabilities (AAIDD) defines Intellectual Disability (ID) as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behaviour, which covers a range of everyday social and practical skills. This disability originates before the age of 18.” i.

Intellectual functioning refers to general mental capacity, such as learning, reasoning, problem solving, and so on. Adaptive behaviour is the collection of conceptual, social, and practical skills that are learned and performed by people in their everyday lives. For example: language and literacy, money, time and number concepts (conceptual), interpersonal skills, social responsibility, self-esteem, social problem solving, the ability to follow rules/obey laws and to avoid being victimized (social), personal care, occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone (practical).

The definition by the American Psychiatric Association is comparable: “Intellectual Disability (Intellectual Developmental Disorder) is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains.” ii The diagnostic term Intellectual Disability is the equivalent term for the ICD-11 diagnosis of Intellectual Developmental Disorders (IDD). The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes as defined by the World Health Organization. ICD is used by physicians, nurses, other providers, researchers, health information managers and coders, health information technology workers, policy-makers, insurers and patient organizations to classify diseases and other health problems recorded on many types of health and vital records, including death certificates and health records. iii

The concept of intellectual disability has evolved over the last years into an ecological and social context-based notion.

The current paradigm is an adaptive one that applies when an individual has difficulties performing specific tasks in its environment, and from it, a notion of support actions to mitigate or annul these barriers comes into place. Those support actions are envisioned as tools or formal/informal support that allow achieving a certain task. They can be continuous or applied in an initial formation phase depending on the individual characteristics of the person in need of the support actions.

From (Hardie and Tilly 2012iv

People can often find the term ‘learning (or intellectual) disability’ a bit confusing, there are lots of different explanations for what a learning disability is and still a lot of myths. Learning disability is a ‘label’ which covers a continuum of abilities, so no two people who have a learning disability are the same. We now understand that people with a learning disability are full citizens who have a right to the same opportunities as you and I. Legislation over recent years has ensured that the rights of people with a disability are respected and that services are more person focused. People have more control over their lives especially if they have self-directed support where they have control of the money to pay for their own service.

There are several definitions of a learning disability; a commonly used one is from Valuing People* .It explains that a learning disability includes the following:-

• A significantly reduced ability to understand new or complex information• A reduces ability to cope independently• Which started before adulthood, with a lasting effect on development

Annex 2.1. Categorization of end users

This means that the person will find it harder understanding, learning and remembering new things, and means that the person may have problems with a range of things such as communication, being aware of risks or self-care.

Josie, a woman with Down’s syndrome explains how having a learning disability affects her;

‘you get stuck a lot. My sister helps me with sorting out my money.’

From www.mencap.org.uk

Mencap, one of the UKs leading charities who describe themselves as the voice of people with a learning disability explain

‘There are many different types and most develop before a baby is born, during birth or because of a serious illness in early childhood. A learning disability is lifelong and usually has a significant impact on a person's life.’

Learning disability is not mental illness or dyslexia. Like all of us, they are individuals who want different things in life and need different levels of support.

A learning disability is lifelong it is not an illness and cannot be ‘cured’, it usually has a large impact on a person's life but with support the person’s learning disability can have much less impact on their lives, the person can learn new skills and live a full life.

Remember people with learning disabilities are always people first and it is important to always focus on what the person can do rather than what they can’t.

2 ABOUT DISABILITIES

2.1 LEVELS

The label ‘learning disability’ is used to describe a very wide group of individuals, covering the continuum from those who have profound learning disabilities and have very low levels of ability and a very high level of care needs, to those who have only mild learning disabilities. There are no clear dividing lines between these groups, nor between people with mild learning disabilities and the general population and there is no clear cut off point; which explains why there are many differences in the numbers reported of people with a learning disability.

These are the severity levels as defined by the DSM V. We particularly appreciate them as there is a broad definition for each level of severity and as the definition is not too strict.

Severity levels for Intellectual Disability

© ABLE TO INCLUDE 2014

http://www.mencap.org.uk/


The various levels of severity are defined on the basis of adaptive functioning, and not IQ scores, because it is adaptive functioning that determines the level of supports required. Moreover, IQ measures are less valid in the lower end of the IQ range (DSM V, p33).

Severity Conceptual Social Practical

Mild For school-age children and adults, there are difficulties in learning academic skills involving reading, writing, arithmetic, time, or money, with support needed in one or more areas to meet age-related expectations. In adults, abstract thinking, executive function (i.e., planning, strategizing, priority setting, and cognitive flexibility), and short-term memory, as well as functional use of academic skills (e.g., reading, money management), are impaired. There is a somewhat concrete approach to problems and solutions compared with age-mates.

Compared with typically developing age-mates, the individual is immature in social interactions. For example, there may be difficulty in accurately perceiving peers’ social cues. Communication, conversation, and language are more concrete or immature than expected for age. There may be difficulties regulating emotion and behavior in age-appropriate fashion; these difficulties are noticed by peers in social situations. There is limited understanding of risk in social situations; social judgment is immature for age, and the person is at risk of being manipulated by others (gullibility).

The individual may function age-appropriately in personal care. Individuals need some support with complex daily living tasks in comparison to peers. In adulthood, supports typically involve grocery shopping, transportation, home and child-care organizing, nutritious food preparation, and banking and money management.

Recreational skills resemble those of age-mates, although judgment related to well-being and organization around recreation requires support. In adulthood, competitive employment is often seen in jobs that do not emphasize conceptual skills. Individuals generally need support to make health care decisions and legal decisions, and to learn to perform a skilled vocation competently. Support is typically needed to raise a family.

Moderate All through development, the individual’s conceptual skills lag markedly behind those of peers.

For adults, academic skill development is typically at an elementary level, and support is required for all use of academic skill in work and personal life. Ongoing assistance on a daily basis is needed to complete conceptual tasks of day-to-day life, and others may take over these responsibilities fully for the individual.

The individual shows marked differences from peers in social and communicative behavior across development. Spoken language is typically a primary tool for social communication but is much less complex than that of peers. Capacity for relationships is evident in ties to family and friends, and the individual may have successful friendships across life and sometimes romantic relations in adulthood. However, individuals may not perceive or interpret social cues accurately. Social judgment and decision-making abilities are limited,

The individual can care for personal needs involving eating, dressing, elimination, and hygiene as an adult, although an extended period of teaching and time is needed for the individual to become independent in these areas, and reminders may be needed. Similarly, participation in all household tasks can be achieved by adulthood, although an extended period of teaching is needed, and ongoing supports will typically occur for adult-level performance. Independent employment in jobs that require limited conceptual and communication skills can be achieved, but considerable support from co-workers,



and caretakers must assist the person with life decisions. Friendships with typically developing peers are often affected by communication or social limitations. Significant social and communicative support is needed in work settings for success.

supervisors, and others is needed to manage social expectations, job complexities, and ancillary responsibilities such as scheduling, transportation, health benefits, and money management. A variety of recreational skills can be developed. These typically require additional supports and learning opportunities over an extended period of time. Maladaptive behavior is present in a significant minority and causes social problems.

Severe Attainment of conceptual skills is limited. The individual generally has little understanding of written language or concepts involving numbers, quantity, time, and money. Caretakers provide extensive supports for problem solving throughout life.

Spoken language is quite limited in terms of vocabulary and grammar. Speech may be single words or phrases and may be supplemented through augmentative means. Speech and communication are focused on the here and now within everyday events. Language is used for social communication more than for explication. Individuals understand simple speech and gestural communication. Relationships with family members and familiar others are a source of pleasure and help.

The individual requires support for all activities of daily living, including meals, dressing, bathing, and elimination. The individual requires supervision at all times. The individual cannot make responsible decisions regarding well-being of self or others. In adulthood, participation tasks at home, recreation, and work requires ongoing support and assistance. Skill acquisition in all domains involves-long term teaching and ongoing support. Maladaptive behavior, including self-injury, is present in a significant minority.

Profound Conceptual skills generally involve the physical world rather than symbolic processes. The individual may use objects in goal-directed fashion for self-care, work, and recreation. Certain visuospatial skills, such as matching and sorting based on physical characteristics may be acquired. However, co-occurring motor and sensory impairments may prevent functional use of objects.

The individual has very limited understanding of symbolic communication in speech or gesture. He or she may understand some simple instructions or gestures. The individual expresses his or her own desires and emotions largely through nonverbal, nonsymbolic communication. The individual enjoys relationships with well-known family members, caretakers, and familiar others, and initiates and responds to social interactions through gestural and emotional cues.

The individual is dependent on others for all aspects of daily physical care, health, and safety, although he or she may be able to participate in some of these activities as well. Individuals without severe impairments may assist with some daily work tasks at home, like carrying dishes to the table. Simple actions with objects may be the basis of participation in some vocational activities with high levels of ongoing support. Recreational activities may involve, for example, enjoyment in listening to music, watching movies, going out for walks, or



Co-occuring sensory and physical impairments may prevent many social activities.

participating in water activities, all with the support of others. Co-occuring physical and sensory impairments are frequent barriers to participation (beyond wachting) in home, recreational, and vocational activities. Maladaptive behavior is present in a significant minority.

Using labels for learning disabilities can be both of helpful and unhelpful at the same time. It can be helpful to the person, their family or those people who work with the person with learning disabilities as it helps them to understand the person, their needs and what support the person might need. The categories can be unhelpful if the person with the learning disability is just seen as that label e.g. ‘profound learning disability’, and not as ‘John’. This can mean that the person is seen as being different than other people or that they get put together with other people who have that same label (even though they might have nothing in common with them) or that they don’t get opportunities to do things because they are seen as not able to do certain things because of the label. An example would be a person with a learning disability living somewhere, with support, where that support does everything for them and not give them the opportunity to use or develop new skills.

2.2 IQ TESTS

IQ (intelligence quotient) tests however are no longer routinely used as their value and use is questioned by many professionals. However intelligence testing using IQ tests which produce a numerical score is still accepted in some medical, educational and legal settings as the basis for identifying learning disabilities.

An IQ test is administered by a psychologist, it produces an IQ score, which simply put is a statistical score compared to average intelligence which is 100, with 71 to 130 considered to be within the normal range.

The IQ of 70 is an international benchmark of having a learning disability, people with a mild learning disability have an IQ of 50 to 70; which is by far the largest group within the learning disability population at 2.23%v (Department of Health 2001). We describe this as the bell shaped distribution of intelligence. The diagram below shows how most people – 95% are within the normal range of intelligence and why there are more people with mild learning disability and the numbers of people tapers out to show that people with profound disability are the smallest group.

In the past, people used to refer to people as having a mental age; a comparison of a person’s abilities to a chronological age, eg they would say ‘John is 27 but he has a mental age of 4’. This is now seen as inaccurate and insulting to people with a learning disability, although very occasionally the press still describe people in this way!

Assessments of adaptive function, that is how people can manage with daily living skills, are now considered more useful in assessing the impact of learning disability, but these tend only to be used when an assessment is required for a specific purpose and are therefore not generally available for every person with a learning disability. A person’s abilities i.e. their adaptive and social behaviour doesn’t necessarily relate to a person’s IQ score as it depends on what opportunities a person has had to learn and practice living and social skills.

Some individuals with mild learning disabilities may even not be identified because they function and adapt well socially.



2.3 CAUSES OF LEARNING DISABILITY

A learning disability can be caused by many things, is lifelong and is present in childhood.

• Pre-natal – This means before birth and covers causes due to genetic causes like Down’s syndrome,Fragile X syndrome and other things such as drug or alcohol use by the expectant mother.

• Peri-natal – This means during birth and includes lack of oxygen to the baby which leads to braindamage and premature birth.

• Post-natal – This means after birth and covers causes such as the child, having a severe head injury orserious illness such as meningitis. For people with a mild learning disability it is suggested that socialsituations such as, overcrowding and poverty, and lack of developmental opportunities are importantfactors.

We don’t always know the cause of a person’s learning disability. About 80% of the causes are identified for people with a severe learning disability, however only 50% of people with a mild learning disability has an identifiable cause. This is because it is usually caused by a combination of restricted learning and social opportunities plus a high rate learning disability in close relatives.

2.4 MODELS OF DISABILITY

2.4.1 Medical model of disability

The medical model of disability is the approach where the person with a disability is considered to have ‘something wrong with them’. This way of thinking sees that disabled people should be ‘treated’, ‘changed’, ‘improved’ and made more ‘normal’. Services with this approach were controlled and run by non-disabled people, often in health settings or with health funding. It was assumed people with the same label had the same needs and people were treated as a group rather than as an individual. Medical practitioners identify therapies and medical interventions to enable people to better fit in with the non-disabled world, and they had the power and control how people lived their lives. This approach has been replaced in the UK and other countries by the social model of disability.



2.4.2 Social model of disability

The social model of disability was first described by UPIAS (the Union of Physically Impaired Against Segregation), a group of disability activists, and the term ‘social model of disability’ was then coined by Mike Oliver, a British academic and disability rights activist in 1983. The social model of disability helps us understand the difference between disability and impairment. Impairment means the loss or lack of functioning in a part of the body which results in physical differences or limitations. Disability refers to the meaning society attaches to someone having an impairment, and how they respond to it, and the disadvantage or restriction of activity placed upon people by others which excludes them.

The social model of disability helps us to understand that the barriers to a person are in society as opposed to being with the person as in the medical model. The barriers can be structural (including failure of service provision), environmental, physical and the attitudes of others.

The social model of disability is about a person’s right to be a full citizen and included in all aspects of everyday life, and the disabling ‘social barriers’ in the lives of people with impairments are identified and challenged.

People with disabilities themselves have changed the way that people now view disability. We now understand the meaning of disability to be about social barriers rather than being about their impairments. This means that



disability is now seen as a form of social oppression and exclusion that should not be tolerated, similar to the oppressions associated with gender, race, class and sexuality.

For people with learning disabilities, the social model of disability means that we should focus on people’s capabilities and not their deficits, and on what needs to change in society so that people can live their lives to the full. It recognises that people with a learning disability are equal members of society with equal lights and that they have skills, abilities, knowledge and experience.

2.5 POPULATION

We don’t know exactly how many people have a learning disability. Partly this is because they are not a distinct group of people and there is no clear cut off for those people with a mild learning disability and those considered not having a learning disability.

In the past there have been poor records of how many people have a learning disability, although now authorities and surgeries keep a register. There are now much better registers of children with special needs so in future years there will be better information of how many adults have a learning disability.

The numbers, or prevalence, of people with severe and profound learning disability is fairly uniformly distributed across the country and between socio-economic groups. People with mild to moderate learning disability are associated with poverty, and rates are higher in socially and economically deprived and urban areas, and clusters in families.



3 CATEGORIZATION OF END USERS

3.1 THOMAS MORE

We think the group of target users mostly exists of persons with moderate and severe intellectual disability, with some differentiation in skills per individual. The categorization should thus not be too strict, as ones skills are also influenced by the developmental opportunities provided by their environment during their lifespan.

The users can be interested in the use of social media, but this interest should not be a decisive selection criterion. This interest could originate from what the caretakers, or others in their environment have told them. Some users might not be interested at first, because they have never heard of it.

The target users with poor reading or writing skills will benefit most from the accessibility layer, as it specifically integrates technologies that support these skills. Persons with better reading or writing skills will probably not be as interested as they will not need to language support (as much).

Users with unclear speech can also be included, as the pictochat enables them to communicate. Specifically for Viamigo, users with unclear speech can be included, as the integration of the accessibility layer with the Viamigo app, creates the possibility to communicate in emergency situations, not by making a phone-call but by using the picto chat.

Persons with IDD with some motor skill impairments can also be included, if they are capable of handling a tablet or smartphone, with or without support (fixation, joysticks …). For the mobility pilot, some mobility of the person with IDD is required as its Viamigo’s main target to improve independent transportation

3.2 BUILDING BRIDGES TRAINING

It is hard to define exactly the type of people with a learning disability who will be the end users of Able to Include, and in order to move away from labels that stereotype we prefer to give a descriptive description of the types of people who we are aiming for.

The people will have a mild or a severe learning disability, and so depending on their personal situations may or may not use specialist services for people with a learning disability. This relates to a reduction of social care provision due to austerity measures in some European countries.

The people with a learning disability may live with family, or independently with or without staff support. It is unlikely that they will be in paid employment although many may do vocational type of activities such as work placements. Mostly people live on welfare benefits.

Their social networks and friendship groups, outside of family members will typically be other people with a learning disability and those who are paid to be in their lives.

Most people will be have some awareness of social media, and an interest in communicating with others. They will most likely have significant difficulties with literacy, but some will be able to read and write in simple English. Some will be able to travel independently on known routes,

Limited income, social networks and independent travel skills all contribute to the social exclusion of people with a learning disability, making the need for more accessible social media imperative

3.3 FUNDACIÓN PRODIS

Regarding the participants, we show some characteristics of their cognitive development and maturation degree, emphasizing:

General characteristics

• Young people aged between 18- 30 years old.



• All students participated in different labour training programs.• They are people with intellectual disability with a percentage between 30% and 80%. Many young

people with Down syndrome, other syndromes associated with intellectual disabilities, and borderlinepeople.

• Young people with different support needs and level of autonomy.

Specific characteristics:

• Avanzas Program/ Promentor Program and Empresa Program: (10, 15 and 11 users) They have somedifficulties in writing messages but they all usually have good oral expression. The messages are madein a reasonable way although they find some troubles when explaining an idea. They are autonomousin most of its shares although the pace of acquisition of skills and strategies is slower than that of aperson of his age.

• Labora Program: (8 users) they have medium difficulty in producing messages. They construct simplephrases but have a good listening comprehension. As for their speech, they have difficulty expressingcomplex ideas but they are able to reflect on what they want to convey. Most have complete autonomyin everyday actions, being the adult figure, guidance and support in some more difficult tasks.

• Occupational Center: (10 users) they have difficulties producing messages. They have a low level inoral expression and are slow in their emissions of messages. The acquisition of concepts, skills andstrategies is done mechanically and with the presence of an adult. Most of them have low autonomyand need the support of adults in their maturational development.

• Special Employment Centre: (18 users). Higher level of autonomy in their daily activities. They speakproperly and they emit clear reflections and are very aware of their actions, without the need forcontinuous support offered by the adult. The type of support needed from adults is based on the needof guidance and direction to perform new learning tasks.



References

[REF ID] Reference

i ‘Definition of intellectual disability’, Definition of intellectual disability. [Online]. Available: http://aaidd.org/intellectual-disability/definition#.VSIvyUZ9fTt. [Accessed: 06-Apr-2015].

ii American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders. American Psychiatric Association, 2013.

iii ‘WHO | International Classification of Diseases (ICD)’, WHO. [Online]. Available: http://www.who.int/classifications/icd/en/. [Accessed: 08-Apr-2015].

iv Hardie, E. and L. Tilly (2012). An introduction to supporting people with a learning disability. London, Learning Matters.

v Department of Health (2001). Valuing People: A New Strategy for Learning Disability for the 21st Century. London, the Stationery Office.


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