Origins of the National Down Syndrome Policy Group (NDSPG), and the All-Party Parliamentary Group on Down Syndrome (APPGDS)
In March 2021, the National Down Syndrome Policy Group (NDSPG) was formed with one clear purpose: to ensure that the voices of people with Down syndrome are not only heard but actively included in shaping key decisions and policies at both local and national levels.
Our Founding Officers brought together a unique and powerful combination of voices – leaders from regional and national Down syndrome organisations, alongside prominent self-advocates with Down syndrome who were actively involved from the very beginning. Their lived experience continues to guide our work, keeping their perspective firmly at the heart of everything we do.
Shortly after, the NDSPG Advisory Group was established, comprising over 120 adults with Down syndrome from across the UK. This group meets regularly, exercises its own governance, and works in close partnership with the NDSPG, ensuring that the voices and perspectives of people with Down syndrome remain central to all aspects of our work.
The Challenge: A Gap in Representation
Early in 2021, it became increasingly clear that a pressing issue needed urgent attention: the needs and rights of people with Down syndrome were not being adequately represented in Parliament. While existing legislation aimed to promote inclusion, it often failed to deliver meaningful support across key areas of life.
A dedicated parliamentary group had once briefly advocated for the Down syndrome community, but it was disbanded in 2015 and had long since disappeared from the political landscape. Recognising the need for consistent and informed representation at the highest levels of government, the NDSPG stepped up to fill that critical void.
A Call to Action: Creating the APPGDS
We believe that direct representation in Parliament is not only important, it is essential. One of our very first goals was to establish a new All-Party Parliamentary Group on Down Syndrome (APPGDS). With the support of numerous charities, individuals and professionals from across the Down syndrome community, we began building momentum.
The NDSPG reached out to MPs across all parties, asking for their support in forming this group. The response was overwhelmingly positive. Within a short time, a new APPG on Down Syndrome was created, bringing together politicians from parties across the political spectrum, united by a shared commitment to people with Down syndrome.
Bringing Lived Experience to Parliament
One of NDSPG’s most important roles is ensuring that lived experience informs every conversation. It’s vital that politicians hear directly from people with Down syndrome, to properly understand the real challenges, aspirations, and needs of the community.
Our first trustees included advocates with Down syndrome who helped shape our goals from the very beginning. As long-time campaigners Heidi Crowter and James Carter so powerfully put it:
“There should be nothing about us, without us.”
Five Priorities for Change
Together with the Down syndrome community, we identified six key areas where targeted action could significantly improve quality of life:
- Community and Wellbeing
- Education
- Employment
- Healthcare and Research
- Maternity Care
- Social Care
These areas continue to guide the focus of both the NDSPG and the APPGDS.
A New Partnership, A Shared Mission
With the NDSPG acting as the official secretariat for the APPGDS, we provide ongoing support behind the scenes, helping the parliamentary group run effectively, stay informed, and remain connected to the community.
Since its formation, this partnership has ensured that the needs and voices of people with Down syndrome are kept front and centre in political discussions, where real change can happen.
A Journey Begins…
This was just the beginning. What followed was a historic step forward with the introduction of the Down Syndrome Bill
Stay tuned for our next blog, where we’ll share the exciting story of how this historic Bill, became a powerful reality.
