CHANGE is a leading national human rights organisation led by disabled people that promotes choices, rights and inclusion for people with learning disabilities. CHANGE’s mission in all of its work is to achieve equality, change attitudes and end the discrimination people with learning disabilities face.
CHANGE pioneer and promote inclusive employment. CHANGE works with organisations to change attitudes and achieve equal access. People with learning disabilities co-lead and co-develop all of CHANGE’s work, working with equal pay and status alongside someone without a learning disability. In addition CHANGE produce award winning easy read literature, all of which is co-developed and quality checked by people with learning disabilities.
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Shaun Webster, International Project Worker, CHANGE
Shaun is a grandfather from Yorkshire who has a learning disability. He is an International Project Worker at CHANGE. He travels all over the world to train professionals in inclusion, accessible information and independent living. As part of his work he works in partnership with children’s rights charity, Lumos, working as a mentor to young people in Eastern Europe who have lived in institutions, providing support and building skills and confidence. He is such an international statesman these days that catching up with him was a problem. He was on this occasion just back from addressing the Zero Project Conference on independent living and political participation at the United Nations in Vienna.
Shaun began working with CHANGE in October 2003; he has worked with parents with learning disabilities across the UK, to produce Training the Trainers Course for parents with learning disabilities to train education, health and social care professionals.
He has worked on an employment project where he trained employers on how to create supportive environments and roles for people with learning disabilities that are inclusive and have real impact on their organisations.
He has been influential in campaigning with CHANGE for the UK Government to produce and introduce Good Practice Guidance for professionals supporting parents with learning disabilities and their children. He has delivered training within the UK and across Eastern Europe on Inclusion, good communication and support and making information accessible. Shaun is also currently working with Care Minister Norman Lamb, Simon Stevens of NHS England and others to look at improving employment opportunities for people with learning disabilities and giving more power and influence to self-advocacy organisations.
Shaun is a role model for young people with Learning Disabilities, using his skills and expertise to put the messages about Human Rights and Inclusion on an international platform. Actually I see him as a role model for all of us who by virtue of a label have more difficulty in getting our voices heard
I met him at NHS Innovation Expo in 2014 making some barn storming comments and made such sense. He is a true Change Agent who is walking the walk as well as talking the talk….
Tell us a bit about your work as an International Project Worker at CHANGE
I am working at the moment with young people with learning disability in Eastern Europe who have lived in institutions – building their confidence so they have a real say in how services are run and can do what they want to do in life.
Every time I go over I see how their confidence is growing. The first time we meet, they tend to be very quiet and timid. Then as I spend time with them I see them becoming more aware of everything around them and their confidence starts to grow. I get them thinking. One of them came up to me and said ‘I want to be a role model like you Shaun” and that is exactly what she has done. All I did was pass the torch onto her. Those kids are all achieving things now – they are advocates, peer supporters – whatever they want to be
What are you particularly proud of in terms of the changes you have been part of making?
I am very proud of the work I did in Moldova to give the young people with learning disability a voice and the confidence to express themselves. They told me before they were crying and they are not crying now – which says it all.
On my last visit to Moldova of my visits there I was training them in public speaking. Two of the girls were quite shy but asking me loads of questions. Then some time later I heard from them again but this time actually preparing to visit London. They asked if I would support them during their visit and in the end, they didn’t need my support much at all, they were so confident now. They even met the author of Harry Potter and founder of Lumos, JK Rowling, and had their photo taken with her.
This work is all about breaking barriers and the only way to do this is through inclusive education. This is the only way for it to work.
As you know Sir Simon Stevens pledged for NHS Change day to help drive through change for people with learning disabilities”. What pointers would you give him in how to do this?
Don’t get me started. I could talk all day on this! There’s a lot that needs changing.
Here’s an example. I went with my mum to the hospital for some tests. It took us 20 minutes to find where we had to go (Mum has LD as well). There was no accessible signage with pictures so that we could understand it, no staff to help us. Mum doesn’t usually lose patience but she was getting really upset. There was no colour coding like they have on the London underground to help us get to where we had to go.
To Sir Simon I would say you need to involve us at all levels to sort this out. This includes involving us in training doctors and other staff in how to communicate with people with learning disability and start by getting rid of jargon so that services are really accessible. At the moment they are not.
Here’s another example. I was diagnosed with diabetes. I wanted to do the right thing with my diet and so on but found I could not understand any of the information I was given. Catherine also from CHANGE was the one who helped me. She has diabetes as well as a learning disability and was able to support me by telling me how to spot the signs of problems with my blood sugars and explaining to me about diet in a way that I could understand. This is the kind of peer to peer support that we need to do more of
What they could do in the NHS is use those people who are already working there with a learning disability to give advice on accessibility. In a hospital for example there might be a porter with a learning disability who could help. If there are NO workers with a learning disability in the organisation then that needs to change as well. Simon Stevens should ensure that the people we first meet when we come to a hospital or clinic know how to communicate with people with learning disability. For example it is time to make sure receptionists, the people who send out the letters, who meet us when we first arrive all get proper training and that we are part of delivering that training.
There is so much I could tell Sir Simon but really it is about making sure we are in the room when they are all talking about accessibility starting from the basics such as signage. There is no point in that happening on its own without those of us who know what it is like round the table too.
Any other changes you would like to see?
Definitely to stop lumping us together with people with Mental Health problem. It is NOT the same thing. I talked to the politicians at a conference and it happened there. I am really passionate about politics and all I could think of was “they are running the country and they don’t know the difference”. They should be working with us before they even become MPs and that way they might learn how to communicate better with ordinary people and particularly those of us with learning disabilities.
Give us an example of Shaun the Radical in action.
Just last week I was given 9 minutes to talk at the Zero Conference at the United Nations in Vienna. I left it right to the end to ask why there is not one person with a Learning Disability working at the United Nations. I am not sure they expected that one. I notice things you see.