ICT – Usage by people with Down’s Syndrome

First results of an ongoing investigation in the POSEIDON project
Detlef Oesterreich, Anna Zirk, Eva Schulze, Berlin Institute for Social Research (BIS), Germany
Modern information and communication technology (ICT) can be a big help for people with Down’s syndrome. Smartphones and tablets can provide apps that enable people to better orient themselves when travelling, remembering appointments, reminding them to take their medicine or just staying in permanent contact with their caregivers. This may help them to become more independent and autonomous.
The POSEIDON project (PersOnalized Smart Environments to increase Inclusion of people with DOwn’s syNdrome) tries to develop such an assistive technology. To make sure that this technology will meet the needs of people with Down’s syndrome and the competencies of their potential users it follows a user centered approach. This means that from the beginning of the project users (people with Down’s syndrome) and their caregivers are involved.
In a first step we tried to find out what people with Down’s syndrome need, what they are able to handle and what they want. Therefore, we developed a standardized online questionnaire addressing caregivers, had face to face interviews with people with Down’s syndrome and their caregiver and conducted workshops to get a first impression on how people with Down’s syndrome use modern information technology.
Central to these analyses was the online questionnaire on the everyday life of people with Down’s syndrome, their interests and the extent to which they are familiar with modern information or assistive technologies. The still ongoing questionnaire has been sent out through Down’s Syndrome Associations. In the first step it was provided in English, German and Norwegian, now the questionnaire is also available in Slovenian, Portuguese and Italian. Although the population of people with Down’s syndrome is small, 553 questionnaires were answered. The respondents were mostly parents who have a child with Down’s syndrome.
The first result of our investigation is that people with Down’s syndrome have highly divergent competencies. From the perspective of their caregivers some of them can do a lot of things on their own, some of them cannot do these things at all, and a bigger group is able to do these things with help. This includes the use of modern information or assistive technologies.
Many people with Down’s syndrome already use modern information technology: 83% use a laptop or PC, 77% a tablet and 55% a smartphone (see figure 1). This means that only a small group of people with Down’s syndrome are not able to use these technologies at all. However, within the group of those using these technologies about half of them need help.
Figure 1: Using modern information-technology

1

The online-survey provides a broad overview on the problems people with Down’s syndrome have in their daily life. Questions were asked on time management, handling money, travelling, health behaviour, communication, and school/work/learning. The overall impression is that there are comparatively few things people with Down’s syndrome cannot do at all, but many things they can do with some help. This means that there is a big chance that modern information technology will be of great help in assisting everyday life activities.
Help by information technology is also important for caregivers. They see chances that IT will make their own work easier. They hope to get better informed about the whereabouts of the person they care for (e.g. whether they have reached a destination safely), or setting alerts to remind them of doing certain things (see figure 2).
Figure 2: Features of assistive technologies which would be helpful for caregivers themselves

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The overall impression of our requirement analysis is that people with Down’s syndrome can gain much support from modern information technology. Tablets especially offer a big chance to become more independent and autonomous.
Our analyses show that for people with Down’s syndrome, the major features a tablet has to provide is an easy to handle GPS-system.
Furthermore the application
  • has to be fun to use,
  • motivate for further usage after completing a learning task or travelling alone,
  • be adaptable for individual needs,
  • be robust,
  • avoid need for fast reaction,
  • be able to play music,
  • be able to set reminder alerts, and
  • it must guarantee privacy.
A topic present in all stages of the ongoing project are ethical considerations. Not everything that is helpful can be considered as adequate from an ethical point of view. The problems arising from a technology which is based on surveillance and control meets these problems. How much surveillance can be accepted? How can it be made sure that the surveilling effects do not make its users even more dependent? How can be achieved that people with Down’s syndrome feel supported by the new technology making them feel more independent? These questions have to be taken into account in every stage of the project.
POSEIDON is a three-year project in which about ten countries in Europe will participate. The results will enable us to draw a very clear picture on the situation of people with Down’s syndrome in Europe using ICT.
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Second POSEIDON Workshop in Mainz

Down's Syndrome Association

By Vanda Ridley, Communications Manager, Down’s Syndrome Association

Things have been very quiet on the POSEIDON front since I last reported on the workshop which took place in Oslo in January. Families and professionals from Croatia, Italy, Slovenia and Rumania came to Oslo to tell us about their lives and the kind of technology that would help them become more independent.
Since then the developers have been looking at all the evidence from the workshop, interviews and questionnaires and using the information to help them develop new technology. Karde our Norwegian partners have been looking at phone apps which will help with money management, Tellu also from Norway have been developing a navigation app, Fraunhoffer have been working on an interactive table which can be used in the home and Middlesex University and been working on virtual environments which will support people to rehearse new journeys in their own home.
The last…

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Poseidon Update 2: Workshop in Oslo 25/26 January 2014

Down's Syndrome Association

By Vanda Ridley, Communications Manager, DSA

Poseidon Blog 2 photo 1

Gregor from Rumania and Vicky from Croatia at the famous Holmenkollen Olympic Ski Jump
Last weekend the Poseidon Partners arranged a European Workshop in Oslo with participants from Romania, Slovenia, Croatia and Italy. Four people with Down´s syndrome from these countries took part with their helpers. We wanted to involve other European countries in the Poseidon project and find out what technology they might find helpful in their daily lives.
What was on the Agenda?
Saturday morning was the most interesting day for me as we heard from Serena, Gregor, Vicki, and Laurentiu about their lives.
Poseidon Blog 2 photo 3
The people with Down´s syndrome presented information about their daily lives, interests, likes and dislikes. 
Serena (39) from Italy is a keen sportswoman and a Global Olympic Messenger for her country, her dream is to become a secretary, she lives at home with her mother. Gregor (22) from Slovenia…

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Poseidon Update 1: A sneak peek into the future …

Down's Syndrome Association

Apps that can change the lives of people with Down’s syndrome for the better

By Vanda Ridley, Communications Manager, DSA
538
If you are wondering what I am talking about, the DSA have exciting news to share with you so please read on!
I had the good fortune of spending two days in Oslo on 11/12 November for a project kick off meeting. The project team included members from Britain, myself representing the DSA and Juan Augusto from Middlesex University, members from the National Down’s Syndrome Associations of Germany and Norway and members from a number of small technology research and development companies based in Germany, Sweden and Norway. What project you may ask? The Poseidon Project. Remember that name as you will be hearing a lot more about it!! It stands for PersOnalised Smart Environment to increase Inclusion of People with DOwn’s Sy

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Interesting research on voice recognition

SL13a    Voice recognition
Middlesex University are part of the POSEIDON project and are working on developing technology which will automatically recognise the mood, age or gender of someone with Down’s syndrome from their voice.
This means that if someone is out by themselves using a phone or tablet, the device will recognise if they are becoming anxious or afraid and help can be called. The research requires a large database of voice recordings of people with Down’s syndrome. This is how  we hope you will help:
Go to this web application at http://surveyposeidon.mdx.ac.uk, read the help document which will tell you how to make a voice recording and make a recording.
Please support this research. If you have any questions or comments send them to poseidonprojectsurvey@gmail.com

Middlesex

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