Press releases

European Data Protection Day: An opportunity to empower persons with intellectual disabilities in the digital society

In the wake of the recent agreement on the European Commission’s EU Data Protection Reform package and in celebration of the European Day of Data Protection, let us think outside of the box.

Rapid technological developments that we have witnessed in the past several decades have improved the lives of many. Social networks changed the way we create and develop personal relationships; online shopping has transformed the way we buy clothes or food; online banking has an important impact on how we manage our money. Throughout all these changes, the scale of data sharing and collecting has increased dramatically. In our daily online activities, we share personal information with other people, private companies or public authorities, and this information is used on an unprecedented scale.

Persons with intellectual disabilities are interested in these technological changes as well, often finding solutions improving their quality of life. They are part of the digital society, and like other areas of life, persons with intellectual disabilities are much more vulnerable online and more prone to abuse of their personal data.

It is for that reason that Inclusion Europe, in collaboration with its partners ANFFAS, Mencap, Plena Inclusion and PSOUU, has developed the project Safe Surfing, which aims to ensure that persons with intellectual disabilities know how to protect their data and safely use the internet by improving their knowledge and skills related to data protection. Safe Surfing raises awareness on the challenges persons with intellectual disabilities face when they need to decide which data and information they want to share with others.

Therefore, on this European Data Protection Day, Inclusion Europe and its partners welcome the new Data Protection Reform, and in particular the General Data Protection Regulation, which is providing for a uniform protection of data across the Member States. We are particularly pleased to note that Article 11 of the Regulation specifically requires that any information and communication relating to personal data has to be provided using clear and plain language, adapted to the data subject. Inclusion Europe hopes that the implementing authorities will understand the use of clear and plain language to also include the production of Easy-to-Read versions of documents, in line with the European Standards for Making Information Easy to Read and Understand. We will continue working with the European Commission, the Parliament and other stakeholders in supporting better implementation of these standards throughout their activities.It is encouraging to see that the Regulation also foresees that national data protection authorities are additionally empowered to provide adequate protection to individuals. Individuals will be able to address their national data protection authority directly, even if the concern regarding the use of personal data is in relation to a company outside of the EU. This will largely simplify access to protection for all, in particular for persons with intellectual disabilities. However, the implementation procedures and processes put in place should be accessible for persons with intellectual disabilities. In particular, implementation needs to be conducted bearing in mind that in many cases legal capacity of persons with intellectual disabilities to seek protection may be limited.

Inclusion Europe is looking forward to seeing the Data Protection Reform Package adopted and will work intensively in the two years until its entry into force and beyond with the European and national data protection stakeholders to ensure that persons with intellectual disabilities fully enjoy the improved protection of their data.

For more information, please contact Inclusion Europe’s Secretariat at secretariat@inclusion-europe.org.

Breaking down barriers to digital inclusion of persons with intellectual disabilities

In a constantly evolving world, digital inclusion of persons with intellectual disabilities is essential. Having in mind this year’s theme of the European Day of Persons with Disabilities “growing together in a barrier-free Europe”, Inclusion Europe and its partners in the SafeSurfing project are pointing out the importance of technology as a tool to improve the lives of young persons with intellectual disabilities. Helping them to safely access the digital world contributes to break down the barriers to their full inclusion in society.

Persons with intellectual disabilities are more vulnerable online, and more prone to suffering abuse. Children and young persons with intellectual disabilities are especially exposed to cybercrimes such as cyberbullying or online sexual harassment. They face many dangers due to problems with understanding issues of data protection, or the fact that accessing easy-to-read information could identify a user as having an intellectual disability.

To achieve an effective protection of their personal data, persons with intellectual disabilities have to be provided with the personal support and training they need to decide which data and information they want to share with others. Securing their personal data protects them against discrimination from insurance companies, employers, banks. Supporting persons with intellectual disabilities in using the internet safely could have a huge impact on their level of independence, their well-being and their sense of ownership.

SafeSurfing is an innovative project aiming to train persons with intellectual disabilities on data protection and safe online behavior. Inclusion Europe and project partners ANFFAS, Mencap, Plena Inclusion and PSOUU are working on keeping persons with intellectual disabilities safe online, by improving their knowledge and skills when it comes to protecting their personal information online, and by raising awareness of the challenges they face in this area.

In order to develop training modules that respond to the needs and concerns of persons with intellectual disabilities, project partners launched a social media campaign on the risks and challenges faced by persons with intellectual disabilities when using the internet and social media. Raising issues on informed consent, transparency, and particularly on the need of users to consciously agree or disagree with data processing, these results also called on European Union policy-makers to take into account the needs of persons with intellectual disabilities in the implementation of the Data Protection Reform Package. Participants emphasized the need for persons with intellectual disabilities to be provided with information on how their data is being processed in a free and accessible format, following the European Standards for Making Information Easy to Read and Understand.

Five training videos, available in each language of the project, have already been produced by project partners to help people with intellectual disabilities navigate different aspects of data protection – from understanding what personal information is, to setting up secure profiles on social media, handling privacy settings on mobile devices, or managing potentially risky situations. The videos were all created in collaboration with people with intellectual disabilities.

After a year of development and testing, SafeSurfing project partners are now ready to roll out interactive online training sessions on data protection and safe online behavior for persons with intellectual disabilities. The five training modules will be accessible while offering the possibility to ask questions in real time. Registrations will open mid-December.

For more information about SafeSurfing, please contact Vanessa Vovor, Communications Officer atv.vovor@inclusion-europe.org.

An equal commitment – All EU citizens have the right to understand data protection

It is no longer news that technology is developing at an incredible rate, and that new technological products are adopted faster than ever before. While it took 25 years for telephones to penetrate 10 percent of the United States market, tablets reached the same adoption rate within less than five years.

Although technological innovation has a tremendously positive effect on the lives of many, the risks associated with the ubiquity of technological tools are often underestimated, particularly by the most vulnerable groups in society. An online consultation developing by Inclusion Europe and its partners in the SafeSurfing Project revealed that most people with intellectual disabilities are unaware of the dangers they face when sharing their personal information online. Their parents and carers have also reported that many persons with intellectual disabilities had difficulties understanding the terms and conditions of using certain software and applications, not fully comprehending services they were subscribing to, and also receiving online abuse because of their disability.

Therefore, on the European Data Protection Day, SafeSurfing partners are calling on European Union policy-makers to take into account the needs of people with intellectual disabilities when deciding on the wording of the draft General Data Protection Regulation. Inclusion Europe and its partners welcome the emphasis on informed consent, transparency and privacy by design, and particularly on the need of users to consciously agree or disagree with data processing. Moreover, SafeSurfing partners fully agree with users receiving free and easy to understand information on how their data is being processed. However, what is easy to comprehend for one person could prove to be quite difficult for another. Therefore, people with intellectual disabilities would need to be provided such information in an accessible, easy-to-read format, following the European Standards for Making Information Easy to Read and Understand. Presenting information in such a manner would not only benefit people with intellectual disabilities, but also children or older people. Read more

Click here for the UK version.

Safe Surfing – People with intellectual disabilites to get training on data protection

Identity fraud, cybercrime, cyberbullying – all dangers we knowingly or unknowingly face when simply using the Internet. With 17 per cent of Europeans falling victim to identity theft every year, data protection is a major problem for all European citizens, and particularly for people with intellectual disabilities.

While the use of technological tools was one area which people with intellectual disabilities were particularly excluded from, the past years have luckily seen a major increase in people with an intellectual disability using technology to live more independently and more included in society.  Whether to keep in contact with friends, find information online, or search for job opportunities, using the Internet and mobile applications greatly benefits people with intellectual disabilities in all aspects of their lives. Unfortunately, it also puts them at a much higher risk than the general population.  Whether due to major difficulties in obtaining valid legal consent from people with intellectual disabilities, problems with understanding redress mechanisms, or even the simple fact that accessing easy-to-read information could identify a user as having an intellectual disability, people with intellectual disabilities are more vulnerable online, and more prone to suffering abuse.

“People using online banking and other websites might not know where the information they have given has gone. It worries me a lot and I can’t stop worrying,” said Ismail Kaji, who has an intellectual disability and is a Parliamentary Affairs Assistant at Mencap.  “People online can pretend to be a company and get information from people. This makes me feel unsafe. It is hard, I don’t know who to speak to or where to go for support,” he added.

Therefore, Inclusion Europe, together with partners working in four other European countries, has launched an ambitious project aimed at training people with intellectual disabilities on data protection and on safe online behavior. It is crucial for the latter to be provided with the personal support and knowledge they need to decide what information they want to share with others. Therefore, within the framework of the SafeSurfing project, partners will reach more than 1000 people with intellectual disabilities directly, by using interactive online training sessions that offer participants the possibility of asking questions in real time. Moreover, thousands more could benefit from the five training videos on several areas of data protection that will be produced and shared by SafeSurfing Partners. Read more

Click here for the UK version.