The problem

People who have Down’s syndrome are not involved enough in the work of organisations that represent them.

We wanted 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.

What did we do?

You can read about the first stage of this project here.

At the end of our last CAST project we left with 3 prototype ideas. In the past 10 weeks we have focused in on two of these and are close to being able to share our learnings with our members organisations.

The project was facilitated by Catalyst and funded by The National Lottery Community Fund. We worked in a cohort of 12 UK based charities guided by the wonderful organisation ‘Outlandish’. We worked on problems together, tested things and went to many ‘masterclasses’. It was brilliant to get to spend this time with other organisations and learn from each other.

Rather than building apps from scratch we did extensive research looking at options that already exist. One thing we have learnt is that making an app from scratch is hard work, expensive and often unnecessary.

Communication system

The first was a communication platform for organisations to use to contact people in their preferred method, this would allow them to send out the same message to hundreds of people but in many formats from one platform. So you could send a message to 100 people and some would receive a text, a WhatsApp, a voice memo or email.

We have found an app that will do exactly this called Beeper. The app is still in it’s early stages and there is a waiting list to join. The company are currently working to make it more available and easier for people to sign up. Once we have been able to access the app and tested it with our self-advocacy groups will we share our findings.

Organisational community hub app

As we need to wait for Beeper to become available we focused in on a community hub phone-based app. This would be a place that people could engage with us and each other from their phones in a safe and accessible way. Somewhere we can share group news and media with each other.

We researched and tried out many options, lots of which were not accessible or did not meet our safeguarding criteria.

We have found an app that organisations can fully brand. For safeguarding reasons we need to have control over who can message who, which is possible in this app. There is a news feed very similar to what we had designed. We have tested it with people who have Down’s syndrome and it has been well received.

What are our next steps?

We hope to receive funding to continue the project which will allow us to do the below.

  • Set up 2 self-advocacy networks on branded apps, initially for The DSi Ambassadors and The DSA ‘Our Voice’ group.
  • We will test these over 1-2 months with the groups and change our approaches where needed.
  • Both groups will help us create an onboarding process for new members.
  • Create a guide for our members and other charities with how to set these up.
  • We hope to partner with some of the app developers with the aim of offering discounted rates to our member organisations.

We are excited about the change this may create within our organisations, so that it is easier for people with Down syndrome to take part in our work and our self-advocacy networks can talk to each other more easily.

Want to know more?

You can watch our presentation about the project here.