Let’s empower our learning disabled to lead on change

People with additional needs are helping to make their services and communities better says James Fletcher, director of the Association for Real Change Scotland (ARC)

People with additional needs are helping to make their services and communities better says James Fletcher, director of the Association for Real Change Scotland (ARC)

This week is learning disability awareness week with the theme ‘looking back, thinking forward.’ To mark this, members of the National Involvement Network, a group of over 80 people with learning disabilities or support needs, have decided to hold a unique event in Glasgow called “Hear our voice; 10 years of leading change in our services and communities.’

The event will planned and delivered entirely by people with additional needs with support from ARC Scotland and will be attended by over 180 people who can help shape the future of social care in Scotland.

It will celebrate the remarkable achievements of the members of the National Involvement Network in becoming leaders of change, and highlight their ground-breaking publication the Charter for Involvement.

The Charter for Involvement sets out in their own words how they want to be involved in decisions made about their services and communities.  It does this in a practical and straightforward way that can be understood by everybody.

It avoids the jargon and over-complication that is often introduced by professionals and is a barrier to meaningful involvement and co-production.

Their work has become part of the DNA of Scotland’s social care sector and has already helped to improve the lives of hundreds of supported people across the country.  At this week’s event, a further three organisations will formally commit to putting the Charter into practice- bringing the total to over 50 organisations that are now doing this.

This is making a real difference to work practice and culture within social care organisations and health and social care partnerships in areas such as staff recruitment, training, policy-making and governance.

It is telling that over the past year, members of the National Involvement Network have chosen to focus their attention on speaking with people who have communication difficulties about their experiences of living in their communities.  They have developed a specialised ‘Talking Mats’ framework to do this, and some have undergone training to use it.

Through this work they have helped people to connect with their community resources, such as church and cinema and to express ways in which the support they receive can be improved.

For the members of the National Involvement Network, learning disability awareness week is an opportunity to celebrate their remarkable achievements over the past 10 years.

Lynnette Linton, Chair of the National Involvement Network said “We would like delegates attending the conference to learn what involvement means from the point of view of people who receive support. We hope they will be inspired and motivated to find new ways to hear and include the voices of people who use support services.”

The event is also an opportunity to look to the future and consider how supported people themselves can help social care organisations and the communities they work in to address and adapt to the very real challenges they face.

Learning form the experience of people who receive support (and those who need it but don’t get it) must surely be the foundation for informing the changes still to come within this sector. As Lynnette Linton put it, ‘In future involvement won’t be special, it will just be natural.’

Fortunately, there is a willingness amongst many people to share their experiences in and contribute to finding solutions to sometimes complex issues, such as budget cuts and managing risk.

This valuable resource has yet to be fully realised. To do this, people tell us they must first feel listened to and respected, and to clearly understand how their views will influence the decisions being made.

Meaningful involvement and co-production takes time to do properly, will not always give the answers that are hoped for and may challenge professional assumptions.  However the result is support and community services that are centred around the people that use them.

By this time next year the National Involvement Network aim to have 100 organisations signed up to the Charter for Involvement, and to extend their work to communities out-with the central belt.