About Down's Syndrome : “We Decide” – Awareness Week 2020

All people with Down’s syndrome should have full participation in decision making about matters relating to or affecting their lives.

The right to meaningful participation is a core human rights principle supported by the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

For the last 50 years we have been changing attitudes, raising expectations, campaigning for, and supporting, equality of opportunity and championing inclusion.

Become a member for free! Your voice can help us change attitudes, shape legislation and add the voice of someone with Down’s syndrome to decision making. Adults with Down’s syndrome can join the DSA as a member for free… find out more here.

Having a Voice®

The Down2Earth groupInvolving adults who have Down’s syndrome in our work, creating opportunities for people to be the voice of the organisation and continuing to ensure that people are involved at all levels of the DSA is one of our key strategic aims.

Our growing self-advocacy project, Having a Voice, gives people with Down’s syndrome the opportunity to express their opinions and share their experiences, influence their communities and guide our work.

Find out more about our Having a Voice groups.

Listen to us and read our stories

Hear the voices of people who have Down’s syndrome:

Throughout Down’s Syndrome Awareness Week we’ll be highlighting the support and resources we offer that can be used to support anybody who has Down’s syndrome to participate fully in society.

Easy read resources that can be used to involve people who have Down's syndrome in decision making that affects their lives

Adults who have Down’s syndrome can join the DSA for free…find out more how you can become a member here.

Adult Needs Assessments: information for adults to assist them with their Needs Assessment
Easy Read booklet

Listen To Me – 13+ Transition: resources to help students make decisions about their future
Easy Read booklet

Listen To Me: Childhood Communication: visual resources to support communication
Easy Read booklet

Living the Way You Want…a series of booklets to help families and their family member with Down’s syndrome think about what they might like to happen in the future. They cover topics like making choices about where to live; looking after yourself and your health; and managing money.

The DSActive Health Swap app has been designed to help people with Down’s syndrome and their parents or carers to make positive changes to their lifestyle through healthier eating and activity tracking, whilst also improving their digital skills and capabilities. Find out how to access the app’s delicious recipes and helpful guidance here.

For parents and carers of people who have Down's syndrome

If you’re a new parent…congratulations!! Our New Parent Pack is available straight from our website or you can give the Helpline a call to request a hard copy. We also offer free membership to parents of children under a year old.

Our Helpline is a great place to start.

Call 0333 1212 300 Monday to Friday, 10am-4pm or email info@downs-syndrome.org.uk.

The team are happy to offer support and information to everyone – people who have Down’s syndrome, their families, the people that support them – and can help with a wide range of issues.

The Information Officers will be happy to talk through your questions or concerns and will signpost you to the right resources or support, whether from us or from other organisations.

A call to an 0333 number costs the same as a call to a normal home or business landline.

If you’re a Facebook user, you may want to join one or two of our closed Facebook groups:

As well as providing you with a way to connect to other parents and carers and share your stories, our Information and Training Officers can supply advice and guidance if needed.

We have a wealth of information and resources here on our website…everything from advice on the early years to day to day support for adults with Down’s syndrome, guidance on health and well being and supporting behaviour positively and lots in between.

Are you a health professional?

Remember, people with Down’s syndrome are individuals first and foremost.

If you work in antenatal, neonatal or postnatal care we can help.

  • Our Tell it Right® Start It Right Training (which we deliver FREE in NHS settings) is RCM accredited and will ensure that staff gain accurate, balanced and up to date information about Down’s syndrome and living with Down’s syndrome. It will enable staff to offer the best support to expectant parents, from the very beginning of the screening process, and to new parents. You’ll hear about personal experiences, from parents of a child with Down’s syndrome and/or a young person with Down’s syndrome.
    ‘Fantastic informative day. Message needs to get out to more people especially in the hospitals. Need to go into university to speak to the student midwives who are currently training.’ Labour ward midwife, Bolton
  • Antenatal, Neonatal and Postnatal Care: A Guide for Healthcare Professionals
    This publication has been written for anyone working in antenatal, neonatal and postnatal care. It gives an overview of what Down’s syndrome is, how it can be identified and some examples of people living with Down’s syndrome today and provides guidance on how to support parents.
  • Tell it Right® Information Pack
    As well as the guide, above, we have a whole series of resources for expectant and new parents as well as posters and leaflets to display in your unit. You can download the full Tell it Right® Information pack here.

Do you have a pupil with Down's syndrome in your school or class?

We have two sets of classroom/assembly resources, one for children and one for young people. Find out more and download here.

Our Training and Information Team have a range of workshops that may be of interest to you…and can also arrange specific training sessions for your school. Call us on 0333 1212 300 or drop us an email.

You may also find the following resources helpful:

  • Communications series
    These resources, co-written with a speech and language therapist, offer practical tips and activities for supporting children and young people with Down’s syndrome to develop their communication skills.
  • Supporting behaviour positively
    This resource explains how behaviour support planning and how it can be used to manage, change and support behaviour positively.


Celebrating Success series
Good examples of inclusion in early years settings, primary schools, secondary schools and in further education and employment.

Listen To Me – Childhood

Listen To Me – 13+ Transition

Do you run a business or manage a team?

Have you thought about employing someone with Down’s syndrome?

WorkFit is our employment programme which brings together employers and jobseekers 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.

Register on the WorkFit website and a member of the team will be in touch.

Want to see WorkFit in action? Meet candidates, buddies and employers on WorkFit’s YouTube playlist or read their blog posts.

Are you involved in running a sports club, leisure centre of gym?

Our DSActive programme can help you become more accessible to people with Down’s syndrome.

We aim to provide as many opportunities as possible for people with Down’s syndrome to lead active and healthy lives.

We started in 2006 by offering a football session for people with Down’s syndrome with Fulham FC Foundation. Since then we have grown into a national programme offering many different sports.

We also offer expert training to coaches that provides guidance on the  best way to support people with Down’s syndrome playing whatever sport they coach.

Think about your language

It’s a really simple thing to do, but have a think about how you talk about Down’s syndrome and the people who have the condition.

Our Terminology Guide is a really good place to start.

Do you have questions about Down's syndrome?

Our FAQs page has got answers to some commonly asked questions but you might also want to have a read of some of our publications:

The cover of one of our publications - Down's syndrome: A leaflet for friends & family

A Leaflet for Friends & Family

Down’s syndrome:
Your Questions Answered

Celebrating our Lives:
Adults with Down’s syndrome

Our Helpline team is always happy to help as well!

Call them on +44 (0)333 1212 300 Monday to Friday, 10am-4pm or email info@downs-syndrome.org.uk

The team are happy to offer support and information to everyone – people with Down’s syndrome, their families, the people that support them – and can help with a wide range of issues.

The Information Officers will be happy to talk through your questions or concerns and can signpost you to relevant resources.

A call to an 0333 number costs the same as a call to a normal home or business landline.