The What Matters to Me project demonstrates that, by spending the time to build relationships, and learning about individual ways of communication, it is possible to meaningfully engage with young people with severe or profound and multiple learning disabilities to find out what is important to and for them, and to use what we learn to influence policy and shape the support and services that impact upon their lives.
People with severe or profound and multiple learning disabilities are frequently excluded from being involved in the decisions and choices that affect their lives. Following this project, we want to make sure that what we have learnt can be used to improve the lives of all people with severe or profound and multiple learning disabilities – so that they are not only included but are central to decisions about their own lives.
Over the past 3 years, people with a learning disability, family carers, and a wide range of people and organisations working across all parts of the system – education, health, social care, housing, and more – have worked together to co-produce a lifelong action plan, setting out steps that need to be taken so that children, young people and adults with a learning disability can get the support that they need.
As part of this, we have used what we have learnt from the What Matters to Me project to ensure that people with severe and profound and multiple learning disabilities are represented in the action plan. We have reflected what we have learnt from young people into the section on ‘Transition to Adulthood’, so that their experiences can help improve their lives and the lives of other young people in similar situations, and emphasised throughout that just because a person is non-verbal or communicates in a different way, it does not mean that they do not have views, or that these should not be sought and taken into account.
The action plan goes beyond a list of actions for policy-makers. Through the process of co-producing the plan, the people involved have learnt from each other and taken away new ways of working in more person-centred ways. By sharing the What Matters to Me project throughout the plan’s development, people have told us that it has helped them to think about whether they are meaningfully engaging with people with severe or profound and multiple learning disabilities to gain their input, and to put the principles of this project into practice.
While the initial project focused on a small group of young people going through transition to adulthood, by embedding what we have learnt from the project into this action plan and sharing it with people working across a wide range of sectors, What Matters to Me has shown that this learning can be used to have a much wider impact on policy and practice.