We believe that people with Down syndrome should be included in the work of organisations at all levels, so are looking for new ways to make this more accessible.

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The Project

We had such a wonderful time working with the UK Down's Syndrome Association as part of the CAST Explore Programme which was funded by Comic Relief and the Paul Hamlyn Foundation.

Due to the Covid-19 pandemic almost all our communication has moved online. Many of our members who have Down syndrome have found this transition challenging and have been unable to take part remotely or have struggled to engage. It has become clear that organisations need to adapt and find digital solutions to connect with people with Down syndrome.

With this is mind we wrote a user statement:

"As a person with Down syndrome, when I am working with organisations remotely, I need clear and accessible communication so I can understand and take part."

We then joined a cohort of other charities who were working on their own problems using the same process.

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How did we do it?

Looking at barriers that people with Down syndrome face when taking part in organisations work remotely. We went through a 12 week process, using design techniques to think about digital solutions. We were guided by CAST throughout and took part in regular sessions with our peer group.

We had a regular working group which consisted of people with Down syndrome, organisations and parents. We met every week to work on different areas of the problem. Thank you to Down Turkiye, Emirates Down Syndrome Association,  Down Syndrome International National Representatives from Down Syndrome South Africa,  National Down Syndrome Society, Down Turkiye, and the UK Down's Syndrome Association's Our Voice for all your contributions and time spent on the project.

In this group we:

• Spoke about the problem in detail with a large group of stakeholders.
• Did extensive research, much of which was carried out by group members who have Down syndrome who conducted interviews on our behalf.
• Looked at products that already exist.
• Generated loads of ideas.
• Created prototype ideas and developed these through testing.

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What have we made?

We now have three prototype ideas. A prototype is a good way of showing what an idea may look like without spending lots of time and money. It is not a finished product but a way of testing ideas.

1. A communication system which will enable organisations to send the same message out in many formats, like email, text, Whatsapp, voice messages and Facebook. This is as we discovered that people who have Down syndrome often have a preferred communication app. This would enable organisations to reach a large amount of people in their preferred format quickly and efficiently.

2. A communication app that could be used by self-advocacy groups and other networks of people who have Downs syndrome. This would enable people who have Down syndrome to build their network and communicate with peers in an accessible and safe format. 

3. A process for overcoming barriers to accessing technology. Including providing individuals with free devices which would have our communication systems pre-installed.

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What are our next steps?

We are very happy to announce that we have just had some further funding confirmed by The National Lottery Community Fund. Which will enable us to work with The Catalyst and a digital partner, to start turning our prototypes into a reality.

If you are a UK based charity looking for support with developing your digital communications or online presence, we would really suggest finding out some more about CAST.