Helpful Resources & Links
Support, Signposting, and Trusted Information for Families of Children with Down Syndrome
We know how important it is to feel informed and supported – especially when you’re navigating new diagnoses, health concerns, or educational pathways. This page brings together a carefully chosen collection of links, guides, and services that we believe can genuinely help.
Whether you’re looking for practical advice, professional services, community support, or clear explanations of your rights – you’re in the right place. You don’t have to read everything at once. Bookmark this page and come back whenever you need it.
How to Use This Page
We’ve grouped links by theme – so you’ll find resources about:
We’ve grouped resources to help you find what you need quickly:
Transition to College, Work & Adulthood
Communication & Learning Support
Research & Education Studies
Inspiring Stories
Each link includes a short explanation so you know what to expect before clicking.
A Note of Reassurance
You don’t have to read everything. You don’t have to do everything at once. Take your time, and trust that you’re not alone. Sundowns is here to support you as you explore the next steps – whether that’s finding the right therapy, understanding the school system, or simply connecting with another family who’s been there too. Please reach out to one of our team at anytime contact us.
Highly Recommended: The Little Orange Book of Knowledge
We also strongly recommend reading the Little Orange Book of Knowledge by Positive About Down Syndrome (PADS). It’s written for parents, by parents, and offers down-to-earth explanations of the different services and professionals you may come across in your child’s early years.
From speech therapy to ophthalmology, portage to paediatrics, it’s a brilliant and accessible overview of what support your child may need and how to get it.
Key National Organisations & Charities
These trusted organisations provide advice, information, and community connections for families across the UK.
Down Syndrome UK
Offers comprehensive support from pregnancy through to secondary school, including online groups and resources for new parents.
➤ Down Syndrome UK
Positive About Down Syndrome (PADS)
Real stories, support for new and expectant parents, and early development sessions such as Makaton signing courses.
➤ Positive About Down Syndrome
Down’s Syndrome Association (DSA)
National charity offering information, helpline support, training courses and the WorkFit employment programme.
➤ Down’s Syndrome Association
NHS – Support for Families and Carers
Information on health services, local support and guidance for families of people with Down Syndrome.
➤ NHS Information
Genetic Alliance UK
Provides information and networks for families affected by genetic conditions.
➤ Genetic Alliance
Support for New & Expectant Parents
If you’ve just received a diagnosis, these resources provide reassurance, real stories and practical guidance.
Down Syndrome UK – New Parent Resources
Comprehensive guides on early development, breastfeeding, and first steps.
➤ Visit DSUK
Down’s Syndrome Association – New Parent Pack
Free downloadable pack with information about feeding, development and early milestones, plus a free first-year membership.
➤ Visit DSA
Positive About Down Syndrome (PADS)
Honest, supportive information for new and expectant parents, written by families.
➤ Visit PADS
Down’s Syndrome Association – Pregnancy and Baby Resources
Guidance for expectant parents and families, including resources for relatives and healthcare professionals.
➤ Visit DSA Pregnancy Support
NHS – Advice for New Parents
Guidance on what to expect and how to find local services and support.
➤ Visit NHS
Starting School & Primary Education
Starting school is a big milestone. These resources help families and teachers prepare for a positive, inclusive experience.
Down Syndrome UK – Starting School Guide
Practical advice for parents and teachers, plus a This Is Me profile template to introduce your child.
➤ Down Syndrome UK
Down’s Syndrome Association – Back to School Resources
Transition checklists, relationship-building advice, and classroom support ideas.
➤ Down’s Syndrome Association
Down Syndrome UK – Primary School Resources
Posters, toolkits and teaching strategies for literacy and numeracy.
➤ Down Syndrome UK
New to the SEND and EHCP Process?
We’ve created a dedicated page to help families understand how the Education, Health and Care Plan (EHCP) process works – with a specific focus on children with Down Syndrome.
👉 Visit our EHCP Guide page
Secondary School & Further Education
Preparing for secondary school can bring new challenges. These guides help families plan and ensure continuity of support.
Down Syndrome UK – Secondary School Resources
Best practice guides for parents and educators.
➤ Down Syndrome UK
Down’s Syndrome Association – Secondary Education Guide
Transition strategies, preparation tips, and ways to ensure an inclusive experience.
➤ Down’s Syndrome Association
Transition to College, Work & Adulthood
These resources support young people and families as they move from school into adulthood, college or work.
Down’s Syndrome Association – Transitions Guide
Comprehensive advice on moving into further education or employment.
➤ Visit DSA
Down’s Syndrome Association – Planning for Adulthood
Covers EHCPs up to age 25, employment, and independent living.
➤ Visit DSA Planning Guide
WorkFit (Down’s Syndrome Association)
Tailored employment support for people with Down Syndrome and inclusive employers.
➤ WorkFit
Supported Internships – GOV.UK
Government programme for young people (16–24) with EHCPs to gain work experience.
➤ Supported Internships
Disabled Students’ Allowance (DSA)
Grant support for students in higher education.
➤ Learn More
Communication & Learning Support
Signalong
Signing system supporting communication for children with speech or language difficulties.
➤ Signalong
Makaton
Widely used signing system to support understanding and communication in early years and education.
➤ The Makaton Charity
Research & Education Studies
Academic studies and evidence-based practice shaping the future of Down Syndrome education and inclusion.
Supporting Numeracy in Mainstream Education – Down Syndrome Australia
Teacher Attitudes & Expectations – Down Syndrome Australia
Advancements in Down Syndrome Research – Oxford Academic
These studies highlight the importance of inclusive education, teacher training, and recognising individual learning styles.
Inspiring Stories
Real stories showing what’s possible when people with Down Syndrome are supported to reach their potential.
Lloyd Martin – Youngest person with Down Syndrome to complete the London Marathon
Dan McGauley – British powerlifter and double European gold medalist
Charlie McGee – One of the first students with Down Syndrome to join a university fraternity
Jennifer & Jack Barry – Irish ambassadors promoting inclusion through Down Syndrome Ireland
Jagger & Chip – Young swimmer learning from an instructor who also has Down Syndrome