Three years after the Down Syndrome Act 2022 received Royal Assent, the DS community are still waiting on guidance to be issued from the government to help turn unmet needs into support. Hope has been renewed that we will see progress soon, after a debate just held on 19th March 2025 in Parliament. The debate brought forth a chorus of united calls from MPs for swift and specific implementation of the Act.

Why has there been a delay?

So far, drafts of the guidance have been produced which have been inadequate, stalling progress. Sir Liam Fox, who introduced the Act as a private Member’s Bill, recently wrote to the Chair of the Health and Social Care Committee to bring attention to the lack of forward movement and engagement:

“When the House of Commons unanimously passed the Down Syndrome Act, it felt like a real dawn had arrived for those with Down Syndrome and their families. We were promised new government guidelines covering health, education and social care that would phenomenally improve service provision and provide accountability to service users … Despite repeated promises we have not yet seen the formation of an effective cross Ministerial task force … Now, three years after the legislation reached the statute book, this is completely unacceptable.”

The delays have been somewhat hard to explain given the extent of support for the Act. There is concern among MPs that behind the scenes, the Down Syndrome Act – the first piece of legislation of this kind globally – is being used as an umbrella for other interests that do not fit the same profile. This has complicated the process unduly and blurred the focus on Down syndrome. It’s a sensitive subject: this Act was directly intended to meet the needs of tens of thousands of people affected by the most common genetic syndrome, but doesn’t imply that other conditions deserve less support. However, if the focus of this Act is overstretched to include other conditions, we are likely to end up with vague generalised guidance that fails to clarify the unique needs of the DS community.

What did the debate clarify?

Ten speeches were made, each deeply supportive of the implementation of the Act. Seven of these speeches directly called for assurances that the guidance will be specific to Down syndrome. Among them were Andrew Cooper, MP, who noted:

“… there are concerns that the current draft of the guidance does not reflect the original intent of the Act and lacks the Down syndrome-specific focus in line with the Government’s statutory duty … The Down Syndrome Act and its guidance offer an incredible opportunity to improve outcomes for people with Down syndrome, but we must ensure that the guidance reflects the specific needs of the community it aims to serve.”

Bobby Dean, MP gave voice to his constituent Lucienne (from the NDSPG):

“It is fitting to give the last word to Lu, and these are the questions that she wants to ask the Minister. What is happening with the guidance, and why the delay? … Lu wanted to labour the point about the specific learning profile that requires specific interventions. She asks, “What is the point in a Down Syndrome Act if it is not specific to people with Down syndrome?”

This concern to protect the precise focus of the Act was voiced repeatedly throughout the debate. Requests for commitment to a timeline of action were also made frequently.

What can the DS community expect now?

Karin Smyth, Minister for Secondary Care, standing in for the Minister for Care, Stephen Kinnock, acknowledged the urgent need for progress and stated that there is “intention to put the guidance out for consultation by the summer”.

Jen Craft, MP and mother of a child with DS, gave an inspiring speech and rallying call of encouragement to anyone affected by Down syndrome.

“Happy World Down Syndrome Day—I love all of you [DS organisations and community]. If anyone is ever worried about what the future looks like, come and talk to me, or to any of us, because we can tell you that it is not just going to be okay; it is going to be brilliant.”

In union with every person with Down syndrome who has been calling out for the provisions of this act, we sincerely hope to see the Down Syndrome Act move to the next stage of implementation soon, to play its important part in this brilliant future.