About Us

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Who we are

We have over 40 years experience of supporting people with Down’s syndrome and their families.

Down’s Syndrome Scotland is a small committed charity, established in 1982 to support people with Down’s syndrome, their families and their carers. We also support professionals who work with people with Down’s syndrome in health, social care and education. We are the only charity in Scotland dedicated solely to supporting people with Down’s syndrome and their families and carers.

The majority of our staff have lived experience of Down’s syndrome, which is why we can provide support “all through life” support nationally across Scotland. We know what we are talking about.

We also know that every person with Down’s syndrome is a unique individual, full of potential. Our mission is to help everyone we work with to reach their fullest potential through our different services, to celebrate that potential, and influence public policy through calling out inequality when we see it. We have your back.

Our Vision and four big dreams

Our vision is of a society that fully values and includes people with Down’s syndrome.

Our purpose is to improve the quality of life of everyone with Down’s syndrome living in Scotland.

Our mission is to support families and people with Down’s syndrome to reach their full potential by providing a range of services, influencing public policy and by changing attitudes.

What we have heard, listened to and are actively responding to are the ‘Big 4’ that people with Down’s syndrome, their families and carers want us to prioritise. These are big programmes for change:

Better Health: We have known that there is a pressing need to address health inequalities and improve health outcomes for people with Down’s syndrome across Scotland. That need has become even more acute as our community was disproportionately impacted by the COVID-19 pandemic.

Employment: People with Down’s syndrome have an immense range of qualities and skills. And yet, less than 7% of people with learning disabilities are in paid work. We know that lots of people with Down’s syndrome who want to work, don’t have a paid job. Hear how we are changing that.. Read more..

Transition Planning: People with Down’s syndrome and their families experience many key transition moments in the course of their lives. Leaving school and starting your young adult life can be a challenge for everyone but for people with Down’s syndrome this key transition step is often fraught with additional hurdles and difficulties.

Community Living: People with Down’s syndrome tell us they want to be active members of their communities, they want to be visible, valued and included. When we ask adults with Down’s syndrome what would make their lives even better, they tell us they want to build friendships, have more opportunities to socialise and live in their own home.

Our Board of Trustees

As a Charitable Company Limited by Guarantee we are governed by a board of trustees. They oversee the strategy and are responsible for the governance of Down’s Syndrome Scotland. This means they must run it in a way that complies with our governing document and the law.

Andrea Tonner, Chair

Andrea Nolan OBE

Patricia Jackson OBE

Jim Batchelor

Aidan McEvoy

Rob Molan

Amy Dalrymple

Katrina Leese

Our Expert Group

Our Expert Advisors Group is a group of eight adults with Down’s syndrome who share their lived experience to inform national developments including policy making and new legislation. The group meet in person every few months and cover topics including human rights, speaking up, confidence building, leading meetings and delivering presentations.

The Expert Advisors Group is a key part of the fabric of Down’s Syndrome Scotland, and we are continuing to explore with them their increasing involvement and influence on all aspects of our work.