01/09/2026
4 Years. Still Waiting.
Four years ago, the Down Syndrome Act became law.
It was a landmark moment and brought real hope that people with Down syndrome
would see meaningful change in the services and support they receive.
But legislation alone cannot deliver that change.
Four years on, we are still waiting for the final statutory guidance that will help turn
the ambitions of the Act into reality.
Over the next eight days, we will be sharing why this matters — culminating on 8
September, when we will take an Open Letter addressed to Andy Burnham to Downing Street.
We supported the Act. We contributed to the consultation. We shared our lived
experience.
Now it is time to turn the Act into action.
Please share this post and help us make our collective voice impossible to ignore.
