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Down Syndrome Act 2022

The Down Syndrome Act: a step forward maybe...But what about Fragile X?

The recent Down Syndrome Act has led to an outpouring of strong feelings within both the Down syndrome and learning disability community.

The Act itself aims to “make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision; accordingly, and for connected purposes.”

The second reading of the Down Syndrome Bill took place on 26th November 2021 and was passed uncontested. The Down Syndrome Act then received Royal Assent on 28 April 2022. It was originally proposed by Dr Liam Fox MP as a Private Members' Bill (legislation suggested by one individual rather than a political party, which often focuses on campaign issues and groups). The Bill is the first of its kind and the 40,000 people with Down syndrome in the UK will be recognised as a specific minority group for the first time.

Clearly, as the Managing Director of the Fragile X Society, I am concerned that Down Syndrome has been selected as one individual group rather than addressing the needs of the whole sector. This approach seems to be exclusive and discriminatory; why single out people with Down syndrome to be given preferential treatment over other people with different diagnoses or learning needs? Surely, all people with learning disabilities should be treated equally and need access to the right opportunities in work, leisure, housing, education and healthcare. These challenges do not just apply to Down Syndrome, they are equally applicable to Fragile X.

The Act does not seem rooted in the ‘social model’ of disability either (that it is society that needs to change, not the disabled person) and instead it is rooted in medical diagnoses. This in itself can be seen to reinforce stereotypes of medicalisation and receiving care. There is an argument which suggests that other organisations like the Fragile X Society could benefit from the Act through the additional publicity it creates, but I think that this is a speculative and unlikely outcome.

It is really important to acknowledge the view of those who have legitimate concerns about the possible effects of the Act on the wider learning disability community. As such, I am already actively taking part in the wider debate. Please do contact me if you have anything to add to the discussion.

Furthermore, I believe it would be very beneficial for you, as Fragile X Society Members to have your say and participate in the survey for the Down Syndrome Bill below:

Although, at first glance the survey appears to be aimed at the Down Syndrome Community, you will see that the later questions are designed to bring on board the views of other organisations and individuals like us. Indeed, the Government has said: “The call for evidence is focused on Down’s syndrome but will also test whether the guidance can benefit other people too. Those with a different genetic condition, as well as their families and carers, are invited to contribute”.

With this thought in mind, it should be a very valuable use of your time if you could complete the survey and help to ensure that the views of the Fragile X Community are represented. The call for evidence closes on 8 November 2022.

Many thanks,


Pete Richardson

Managing Director

Fragile X Society


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