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What we do

The Down’s Syndrome Association supports people who have Down’s syndrome, and their parents and carers, throughout their lives. From before birth into older age, the DSA provides services to everyone.

(Click the buttons below to show/hide the different sections.)

Helpline
DSA Training
Inclusive Participation
Information
Campaigning
Workfit
DSAactive
Advocacy

Our Information Officers are available to answer calls Monday to Friday, 10am-4pm

Together with our team of specialist advisers, we offer advice about any aspect of living with Down’s syndrome including prenatal support, benefits, education, service provision, rights, health, speech, language and communication, complex and adult needs.

We are also able to provide a reassuring ear to parents and carers if they are simply having a difficult day.

Story from a caller:

“I am not very good at navigating. I get lost in fog. So when my son who has Down’s syndrome was born I had no idea where to turn. I rang the DSA that first year, I didn’t know why or what I was hoping for. I think I may have wanted them to say, here’s the route, the map is in the post. The truth is though that every journey is totally different and there is no definitive way to go. I didn’t know what question to ask. Since that first call I have lost count as to how many times I have rung. I have asked for help navigating the social care system, the education system and healthcare. I am now educated as to what my son’s rights are, I have a health care booklet and all of his annual healthcare checks are carried out. Sometimes I have rung in full flooded rage and said, ‘ Have you seen this in the news?’ What is happening about it? You can guarantee they would have already seen it.

I have had all the conversations there are to be had with the DSA. Sometimes a phone call is not enough. Things go wrong. It gets hard. We get lost. This is what happened to us and then we don’t make those calls and we go silent. We feel alone. It was then that we entered our son’s photograph into the My Perspective competition and he won. We were so broken that we didn’t attend to collect his prize which was a camera. It changed his life. Gave him direction and now he has developed confidence beyond anything we could ever imagine. That first call was eighteen years ago and with support Jamie is now flying. He is now being supported by the DSA through their Workfit scheme and we have everything crossed that soon he will be working. I would say to parents, go to the DSA ask them the questions that you really want to know the answer to. It is a dynamic association, advocating, researching, improving the lives of people with Down’s syndrome on a personal level but also on a national one.

Eighteen years ago, that first phone call I made, I realise the question I wanted to ask is, ‘I am afraid, I am lost, I cannot do this on my own. Since then they haven’t left our side. I think they heard me.” (name changed to protect identity)

We offer training to support individuals at every stage of their lives. From our Tell It Right® study days for maternity professionals to conferences, workshops and online training about education and development, positive behaviour support, adolescence, support for adults, Down’s syndrome and health awareness, ageing and dementia.

Training sessions are offered to support individual settings like schools, local authorities, supported living providers and care homes. These sessions will be very specific, tailored to the individual setting, and may be delivered remotely or in person. Tell it Right study days are run in hospitals across the country and are designed for midwives and all related health professionals; doctors, nurses and sonographers. They are very powerful sessions, providing up-to-date and balanced information as well as true life experiences from parents and young adults who have Down’s syndrome.

‘I realise now that lifelong messages are taken away from words spoken at a sensitive time’. Midwife, South Wales

Inclusive participation is about everyone being able to take part in the work and activities of organisations. It means everyone’s voice is listened to and that decisions are made with people rather than for them.

We include people who have Down’s syndrome in all aspects of our work and they tell us what is important to them.

‘Our Voice’ is a team of people who have Down’s syndrome.

They work on projects and tell the DSA what they think about the work we do.

The Down’s Syndrome Association is here to amplify the voices of people who have Down’s syndrome by working together.

We produce a wide range of resources which cover all aspects of living successfully with Down’s syndrome. Many of these resources are available to download from our website and some can also be ordered in hard copy. Our resources are constantly being updated and the range extended as gaps in the range are identified or new subject areas are requested.

We seek to promote the rights and welfare of people with Down’s syndrome at all levels of society and raise awareness and understanding of the condition.

We engage with the Government and local authorities in public consultations and lobby for change and inclusion. As well as running our own campaigns in response to issues raised by our members and people who have Down’s syndrome, we also co-operate with sector wide partnerships including the Disabled Children’s Partnership, the Disability Benefits Consortium, the Care & Support Alliance and the Special Education Consortium. Each year on 21 March we celebrate World Down’s Syndrome Day alongside people from all around the world and, here in the UK, the accompanying Down’s Syndrome Awareness Week is the focus of our campaigning year.

WorkFit is the Down’s Syndrome Association’s employment programme which brings together employers and job-seekers who have Down’s syndrome. It is a tailored service dedicated to training employers about the learning profile of people who have Down’s syndrome so that they can be supported in the workplace. We focus on finding the right employment opportunities for people who have Down’s syndrome and ensuring that they have the support they need to be successful in the workplace.

Supported employment is not an end destination but a stepping stone into a career pathway. Be inspired by our YouTube videos which illustrate the range of job roles that our candidates are employed to do. The Down’s Syndrome Association wants to progress employees towards expanding their experience and learning new skills through training, confidence building and opportunities for professional development. Hundreds of people who have Down’s syndrome have found jobs through this project and have thrived in their roles, as have their colleagues and employers. We are very proud that the retention rate is over 85%.

The goal of the DSActive project is to provide as many opportunities as possible for people with Down’s syndrome to lead active and healthy lives. We currently have over 100 tennis and football sessions all around the UK. The range of activities is constantly growing and there are also athletics, sailing, cricket, walking and running sessions. We offer expert training to coaches, run festivals to celebrate the achievements of our athletes, support people with Down’s syndrome to achieve coaching qualifications and advise sport’s governing bodies about how to make their general sessions accessible for people with Down’s syndrome.

We also provide the free Health Swap app which helps people to make healthier choices. It was designed specifically to meet the requirements of people who have Down’s syndrome, has loads of recipes, nutritional guidance and a planning and shopping facility. Users track what they’ve eaten and the exercise they’ve done. It encourages people to make healthy choices independently.

Advocacy is acting with or on behalf of people with Down’s syndrome to resolve an issue, obtain needed support or promote a change in practices or policies. Advocacy is essential for promoting and protecting the civil and human rights of people with Down’s syndrome and for establishing, maintaining or improving their quality of life.

Individuals and organisations can be advocates for people with Down’s syndrome. The DSA works with advocates in different roles and many organisations to share knowledge and to offer information, advice and support, with the ultimate aim of improving quality of life for people with Down’s syndrome worldwide and promoting their inherent right to be accepted and included as valued and equal members of their communities.

Self-advocacy is the ability to speak-up for yourself and the things that are important to you. Self-advocacy means you are able to ask for what you need and want and tell people about your thoughts and feelings. Self-advocacy means you know your rights and responsibilities, you speak-up for your rights, and you are able to make choices and decisions that affect your life. The goal of self-advocacy is for you to decide what you want then develop and carry out a plan to help you get it. It does not mean you can’t get help if you need or want it, it just means that you are making the choices and you have to be responsible for the choices you make.

When you have good self-advocacy skills you can have more control and make the life decisions that are best for you. Self-advocacy helps to empower you, to speak-up for yourself and make decisions about your life.

People who have Down’s syndrome may need the support of advocates to become effective self-advocates.

The DSA works with self-advocates who have Down’s syndrome from around the country to learn about their lives and determine the best way to offer them support.