Have your say on draft Down Syndrome Act guidance

2 mins read

Wednesday 7 January 2026

The government has published long overdue draft statutory guidance for the Down Syndrome Act 2022, along with a public consultation inviting responses before 30 March 2026.

Families of children with other genetic conditions or learning disabilities can also respond to the consultation.

What the draft guidance covers

The guidance:

  • Sets out what public bodies in health, social care, education and housing should or must already do under existing laws to meet the needs of people with Down syndrome.
  • Aims to improve understanding of Down syndrome and reduce the barriers families often face when seeking support.

The guidance explains how existing duties under the Care Act, Children and Families Act, Mental Capacity Act and Equality Act should apply in practice, stressing:

  • Personalised, non-stereotyped support.
  • Better awareness and training for frontline staff.
  • Coordinated planning across services.
  • Reasonable adjustments.

An estimated 40,000 people with Down syndrome of all ages live in the UK. Many struggle to access appropriate support despite existing legal protections.

Why this matters for families

While the draft guidance largely repackages existing duties, by bringing these duties together in one document, it has the potential to make it much clearer to local authorities and the NHS what they should already be doing. It may also make it easier for families and carers to hold public bodies to account.

Although the Act focuses on people with Down syndrome, the consultation welcomes views from families of children with other genetic conditions or learning disabilities who have similar needs.

Have your say

The consultation runs until 30 March 2026 and includes an easy read version for families and young people. Responses will be used to shape the final statutory guidance before it is issued to all public bodies in England.

Read the draft guidance and respond to the consultation on the government’s website.

Alternatively, you can share your views and experiences for inclusion in Contact’s consultation submission by emailing [email protected]