Inclusive participation with CAST The problem People who have Down’s syndrome are not involved enough in the work of organisations that represent them. Due to the Covid-19 pandemic, almost all our communication has moved online. Unfortunately, many of our members who have Down syndrome have found this transition challenging and have been unable to participate remotely or have struggled to engage. Participating remotely can be difficult, with many barriers, including access to technology, hard to use or inaccessible apps, and a lack of effective support. We believe that people with Down syndrome should be included in the work of organisations at all levels, so we are looking for new ways to make this more accessible. We want to find solutions that make direct communication with people with Down syndrome easier for organisations so that it is easier for people with Down syndrome to take part. Who is involved? We are working together with the UK Down's Syndrome Association with input from self-advocates and Down syndrome organisations worldwide. We are working in a cohort of 12 UK based charities guided by the digital agency ‘Outlandish’. We work on problems together, test ideas and attend ‘masterclasses’. We are being supported by a charity called CAST, and the work is funded by Comic Relief and the Paul Hamlyn Foundation. How are we helping? Stage 1 - Explore. We had a regular working group that consisted of people with Down syndrome, organisations and parents. We began by exploring the issue: As a person with Down syndrome, when I am working with organisatons remotely, I need clear and accessible communication so I can understand and take part. The group members who have Down syndrome conducted interviews with a large group of stakeholders to better understand the barriers that people with Down syndrome face when they want to participate in the work of organisations remotely. The working group then looked at existing products and generated ideas. They used this research to develop 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. Prototype 1. A communication system that 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 number of people in their preferred format quickly and efficiently. Prototype 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. Prototype 3. A process for overcoming barriers to accessing technology. Including providing individuals with free devices which would have our communication systems pre-installed. Stage 2 - Definition. Rather than building apps from scratch, we did extensive research looking at options that already exist. As a result, we identified two apps that fulfil our requirements. Beeper. The Beeper app provides a communication system that allows organisations to contact people in their preferred method. Beeper is still in its early stages, and there is a waiting list to join. In the meantime, the company are currently working to make it more available and easier for people to sign up. Once we are able to access the app and test it with our self-advocacy groups, we will share our findings. Connecteam. The Connecteam app provides a 'community hub' where people can engage with us and each other from their phones in a safe and accessible way. Organisations can fully brand this app, and it allows us to control who can message who, which is important for safeguarding reasons. Users can share news and media with each other. We have tested it with people who have Down’s syndrome, and it has been well received. Group learning session Click below to watch our group learning session in which we outline the barriers that people with intellectual disabilities face when participating online, and we present the two apps that we believe could break down many of those barriers. WATCH Stage 3 - Continuation. We hope to receive funding to continue the project which will allow us to do the following: Set up 2 self-advocacy networks on branded apps, initially for the DSi Ambassadors and the DSA ‘Our Voice’ group; Test the apps over 1-2 months with the groups and change our approaches where needed; Support the groups to create an onboarding process for new members; Create a guide for our members and other charities about setting up the apps; Partner with some of the app developers with the aim of offering discounted rates to our member organisations. Long-term impact We are excited about the impact that this project will have, making it easier for people with Down syndrome to participate remotely. This will be very useful during the COVID-19 pandemic and beyond. It will help all of us to better include people with Down syndrome in our work. How can you help? We want to hear from people with Down syndrome, families, supporters and organisations. 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