Lynette Linton: making sure people with learning disabilities have their voice heard

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The publication of the new Charter for Involvement, written by people with learning disabilities, setting out how they want to be involved in the support services they use and their communities, is a huge achievement in making their voices heard.

I’m chair of the National Involvement Network (NIN) which is made up of more than 60 people with learning disabilities from across Scotland. We have been meeting regularly since 2006 to share ideas about things that matter to us and to promote involvement.

We all use support services in various ways and wanted to have more of a say in how they are planned and run. Who better to lead changes in social care support than the people that use them?

The members of the NIN decided to work together to produce a document that set out what we would like to see happening, not just in our services but in our wider communities. But most importantly, we wanted to do it so that we were more respected and listened to.

We wrote the first Charter in 2009 and 25 support organisations chose to sign up to it. This means they promised to use the Charter to make involvement better for the people they support.

In 2012, we looked at how this was working and we asked organisations and the people they support for their feedback and any suggestions for improvement.

There had been many positive changes, for example more people being involved in choosing staff and in their support plans. There were also things that could be improved and we set out to rewrite the Charter and make it better.

We started writing the new Charter in 2013. Everybody in the NIN had their say. It took almost two years to complete but the end result shows the hard work and determination of our group in making our views known and giving a voice to other people with learning disabilities. We were so proud when we saw the finished Charter.

For those of you who have never seen it, it has a tiger on the front cover, because this makes us feel strong and bold.

Many people have now come to associate the tiger with our work.

The Charter has 12 statements which show what matter most to us and how we want to live our lives.

They include “we have the right to live our lives independently”,”we must be involved in our communities” and “we must be at the heart of any plans about our lives”.

In the Charter we describe ways support organisations can put these statements into practice. This will make a huge difference to the lives of supported people in Scotland.

Writing the Charter has made us feel more confident and empowered about issues that affect us, and has given a better understanding of different human rights laws as well as Scottish Government policies.

Since the first Charter was published, the Scottish Government has made changes to laws and policies that affect people who get support, like Self-directed Support. Our main aim now is get as many support organisations to sign up to the Charter as possible and commit to putting it into practice. As I write this we currently have a large number of organisations signed up and I hope that by raising awareness of the Charter we can get 100 organisations to sign up over the next two years.

On a personal level, I hope that the Charter will inspire people who get support to become more involved. I wouldn’t be writing this as chair of the National Involvement Network without the confidence I’ve gained from my involvement with the network. When we launched the Charter last year I spoke at a reception at the Scottish Parliament in front of many people, something I’d never imagined doing before I got involved in this work., Thanks to getting involved with initiatives such as this I feel that my voice is being heard and making a difference.

The National Involvement Network and the Charter for Involvement have been made possible by Association for Real Change Scotland (ARC) Scotland. They have supported the NIN through this process and it is their policy of bringing organisations and people together to find solutions to challenges in Scotland social care sector that has made this possible.

I would like to think that our work with the Charter has improved services and the experiences of people with support needs across Scotland and I would urge other organisations and supported people who would like to know more about the Charter or to receive a copy to get in touch with Association for Real Change Scotland for more information.

Lynnette Linton chairs the National Involvement Network