The Down Syndrome Act became law in 2022 – you can more about the act and watch some films made by the Down Syndrome Association here.

Since 2021, Learning Disability England has been working with members on the Down Syndrome Act.

Most Learning Disability England members said they did not want a separate Act. You can read what members said here.

Members said things like “Unity and solidarity is strength.”

There has been an advisory group working with the government on the guidance that will say how the Act should be used.

Liz and Marianne have been the member representatives on that group. They have shared this update below.

Learning Disability England has been working with the advisory group in drafting the Down Syndrome Act statutory guidance. We understand this guidance is due to published in the next few months for public consultation.

We are pleased that the Minister of State for Care, Stephen Kinnock has listened to the views of LDE members, and that the guidance will seek to strengthen people’s rights, benefitting not just people who have Down syndrome, but learning disabled people more widely.   It is our view that the guidance will now be broader and more reflective of current legislation.

When the guidance is published in the summer, we will contact members for further comment

You can read the letter from Stephen Kinnock about the guidance here.