Working together
A person needs person-centred planning
Good support is responsive to the needs and wishes of the individual.
The level of engagement a person is able to contribute to planning their support will be different depending on their individual needs.
Some people with complex needs may have family and people who know them well taking the lead in designing their support, based on what they know of the person’s interests, likes and dislikes.
Others who are more able to communicate their needs and aspirations are likely to be able to have more influence over planning their own support.
The Down’s Syndrome Association has produced a helpful resource – Listen to me. There are two versions:
This can be used to help teenagers and young people who have Down’s syndrome to think about what works for them and what they would like for their future (eg education, housing, relationships).
At the Down’s Syndrome Association, we strongly believe that our work should be informed by people who have Down’s syndrome.
People who have Down’s syndrome are experts by experience and they are the people who know what life is like for them.
We listen to what they have to say and we share their stories. We have set up and support ‘Our Voice’ which is a network of hundreds of people who have Down’s syndrome who live in England, Wales and Northern Ireland. Our Voice works on projects, helps to guide our work and tells us what they think about the work we do. We work together to think of new ideas and make resources that people want.
Some members meet weekly and some work on projects in focus groups. Our Voice supports the DSA with making new resources, quality checking our information and co-producing training. Group members work on self-advocacy activities and campaigns.
At the Down’s Syndrome Association we recognise the importance of producing and publishing accessible information for people who have Down’s syndrome.
We often use ‘Easy Read’ communications in our work.
‘Easy read’ refers to the presentation of text in an accessible, easy to understand format. It is often useful for learning disabled people.
Easy Read documents usually combine short simple sentences with clear images alongside which further explain the content. People who have Down’s syndrome tend to be very good visual learners due to their strong visual memory, so this is a very useful way to both communicate information and help learners who have Down’s syndrome to retain information too.
We are grateful to the Our Voice team help us develop Easy Read information on a wide range of topics.
If you would like to involve people who have Down’s syndrome in your own work, a useful website is the Listen Include Respect website, which includes some helpful guidelines.
The Listen Include Respect guidelines help organisations understand what they need to do to make sure people with learning disabilities are included in their work. They were written by Inclusion International and Down Syndrome International. Over 1,500 people with learning disabilities and their families from almost 100 countries helped write them.
A short video is also available to tell you more about these guidelines and how they can be put to work.
Useful resources from the DSA
Ten Top tips for supporting self-advocacy
In this video, Abigail from our Information and Training team, shares ten top tips that will support people who have Down’s syndrome to make choices and get their voice heard.
Useful resources from other sources
Supporting the engagement and self-advocacy of pupils who have Down’s syndrome
In this recorded online event, Sam and Catherine from the Our Voice network were joined by Pete Le Grys from PhotoSymbols, his colleague Hayley and DSA Information and Training Officer, Chris Osunsami to talk about the importance of Easy Read information and how co-production and the work of Our Voice helps to develop confident self-advocates.