Our Story – How NDSPG Began

Who We Are

📅 The National Down Syndrome Policy Group (NDSPG) started in March 2021.

🎯 We have one big aim:

👂💬 ➡️ Make sure people with Down syndrome are listened to.

🗳️🤝 ➡️ Make sure they help make decisions about things that affect their lives.

👥⭐ Our leaders include:

🏢❤️ – People from Down syndrome charities.

🗣️💪 – People with Down syndrome who speak up for themselves.

🛤️🌟 Their life experiences guide everything we do.

 

The Advisory Group

🇬🇧 We also have an Advisory Group with over 120 adults with Down syndrome from all over the UK.

📅🤝 They meet regularly.

🗳️🧠 They make their own decisions.

❤️🏛️ They work closely with NDSPG so that people with Down syndrome are always at the heart of our work.

 

The Problem We Saw

🚫 In 2021, we saw a big problem:

🏛️🚷 – People with Down syndrome were not being properly represented in Parliament.

📜❌🤝 – Laws to include people often did not give the real support needed.

🏛️🔒 There used to be a group in Parliament that spoke up for people with Down syndrome, but it closed in 2015.

📣💪 We knew we needed a new, strong voice in politics.

 

Our Call to Action

🏛️🤝 We decided to start a new All-Party Parliamentary Group on Down Syndrome (APPGDS).

🔗 We worked with:

🏢 – Charities

👨‍👩‍👧‍👦 – Families

💼 – Professionals

🙋‍♀️🙋‍♂️ – People with Down syndrome

📨🏛️ We asked MPs from all political parties to join.

✅🎉 Many said ‘yes!’

🏛️🤝💙 Soon, the new group was ready — MPs from different parties working together for people with Down syndrome.

 

Lived Experience in Parliament

👂🙋‍♀️ It is important for MPs to hear directly from people with Down syndrome.

📋🙋‍♂️ From the start, our trustees included people with Down syndrome.

🗨️💬 As Heidi Crowter and James Carter say:

🚫👤➡️👥 “There should be nothing about us, without us.”

 

Our Key Focus Areas

We focus on six main areas:

🏘️💖 1. Community and Wellbeing

🎓📚 2. Education

💼💪 3. Employment

🏥🔬 4. Healthcare and Research

🤰👶 5. Maternity Care

🏠🤝 6. Social Care

 

Working Together

🔗💬 NDSPG helps the APPGDS run smoothly and stay connected to the Down syndrome community.

🗣️🏛️ Together, we make sure voices are heard where important decisions happen — in Parliament.

 

Just the Beginning…

⏳ This was only the start.

📜🏛️🎉 Next came the Down Syndrome Bill — a historic moment.

🔍⚖️ 📖 Read our next blog to find out how the Bill became law.