Down's Syndrome Guidance

On this page you'll find general support and information on things to consider for a child or young person with Down Syndrome.

Page last updated 2nd October 2023

The government is committed to ensuring that people with Down’s syndrome receive the care and support they need, to improve outcomes and help them to live longer, healthier and happier lives in their communities.

The Down Syndrome Act 2022

The Down Syndrome Act 2022 [External Link] became law in April 2022. The act represents a significant opportunity to improve the life outcomes of people with Down’s syndrome, and to raise the understanding and awareness of the specific needs of people with Down’s syndrome.

Down's Syndrome Support

As a parent or carer of a child or young person with Down Syndrome there is some useful information available across various areas that you may wish to consider.

Specialist Down's Syndrome Services:

Get on Down's

Get on Downs is a parent led support group for families with children and young people with Down’s Syndrome or who have had a prenatal diagnosis.

Visit the Get On Down's service directory page.

Down Syndrome Association

Down Syndrome Association is a national organisation, committed to improving quality of life for people who have Down syndrome, promoting their right to be included on a full and equal basis with others. The Down Syndrome Association provides factsheets about Education Rights.

Visit the Down Syndrome Association service directory page.

Positive about Down Syndrome Facebook Page

Positive about Down Syndrome has a Facebook page exclusively for new parents of a little one (aged up to 18 months) with Down syndrome and based in the UK.

Visit the Positive about Down Syndrome Facebook page [External Link]

Down Syndrome UK

Down Syndrome UK provides information about education.

Vist the Down Syndrome UK website [External Link]

Let's Go UK

LETS Go! provides specialist consultancy services for children with Down syndrome. They offer Down syndrome specific training, information, support and services for families, education providers, professionals and organisations.

Vist the Let's Go UK website [External Link]

Learn and Thrive

Learn and Thrive use digital tools to empower people with Down’s syndrome to thrive throughout their lives. Also provides Learning for Life - a new project covering personal health, emotions, relationships, and appropriate behaviour.

Find out more information on the Learn and Thrive website [External Link]

DownSyndromeOK

DownsyndromeOK is an inclusive, parent led, registered charity, offering help and support to families, professionals and people with Down syndrome in Surrey, Sussex and South London. We offer social and networking opportunities, information and training and developmental groups. Our trustees are available for telephone and email support.

Visit the DownSyndromeOK service directory page.

Early Years:

"Sparks" is an early intervention therapeutic playgroup for babies to 4 years. This offers weekly speech and language therapy by specialist provider Symbol UK, early literacy and numeracy skills and music therapy. Visit downsyndromeOK for more information [External Link].

“Digbies” early development groups are the stepping stones towards getting our children with Down syndrome ready for school. Visit PSDS to find out more [External Link].

Health:

Your child’s paediatrician may refer your child to an Occupational Therapist, Physiotherapist and/or a Speech and Language Therapist. There are Down's Syndrome specialist speech and language therapists.

All babies with Down syndrome in the UK should undergo an echocardiogram Downsyndromeuk has more information on their website [External Link].

Education:

DSE work to improve early intervention and education for children with Down syndrome around the world. Visit their website [External Link].

Down Syndrome International [External LInk] has International guidelines on Education. The Down Syndrome Association provides factsheets about Education Rights. Visit their website to view the fact sheet [External Link].

Benefits:

The Down Syndrome Association provides information about commonly claimed benefits, including Disability Living Allowance and Carer’s Allowance. Visit the Website [External Link].

You may be eligible for a blue badge which can help you to park closer to your destination. Find out more about blue badges and how to apply [External Link].

At 16, your child will claim PIP instead of DLA. Like DLA, it is to help with extra disability related costs. It is also not means-tested, but your child’s needs will be assessed under different rules. PIP can be spent in any way that benefits your child. Read more about commonly claimed benefits [External Link].

EHCP's:

Find information about Education, Health and Care Plans (EHCP's). Visit the Cognus website [External Link] to find out more information on the 'Education Pathway for Children and Young People with Down Syndrome'.

Short breaks:

A short break provides opportunities for children and young people with disabilities, who are assessed to be eligible for our service, to take part in positive activities, working towards agreed outcomes whilst also providing respite for their families/carers from their daily caring role. Find out more about short breaks [External Link].

Local Support Services:

Playwise

An exciting not-for-profit organisation that supports families with disabled children/ children aged 0 – 8 years that are not meeting their developmental milestones.

Visit the Playwise service directory page.

Service Playwise Portage Service

The Playwise Portage Service is a home education service for children under three years old with additional needs.

Visit the Portage service directory page.