Down’s Syndrome

Andrew Cooper Excerpts

Wednesday 19th March 2025 Westminster Hall

[Andrew Cooper (Mid Cheshire) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Turner. I declare an interest as co-chair of the all-party parliamentary group on Down syndrome. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on his comprehensive speech and on securing this debate, which holds immense significance for individuals with Down syndrome and their families, especially as we approach World Down Syndrome Day on Friday. That day was chosen because the 21st day of the third month represents the triplication of the 21st chromosome, which is the cause of Down syndrome. I will focus my comments today on the Down Syndrome Act, a landmark piece of legislation that recognises the unique needs of people with Down syndrome, and the ongoing work to update and implement the guidance that will help bring it to life.

As we have already heard, there are an estimated 47,000 people with Down syndrome people in the UK, yet, despite its being the most common chromosomal condition, people with Down syndrome continue to face barriers to achieving their full potential. That is where the Down Syndrome Act comes in. For the first time ever, we have legislation focused specifically on this community, taking into account the distinct health, developmental and educational needs unique to people with Down syndrome. With the right interventions, many people with Down syndrome can lead full, independent lives, attending mainstream schools, gaining employment and participating fully in society. To achieve that and to improve life outcomes for people with Down syndrome, we need more than just general disability support: we need Down syndrome-specific strategies.

This is where the long-overdue guidance will play its part. The guidance will determine the success of the Act and be a practical road map that provides clarity on how the principles of the Act should be implemented. Without it, the Act will just remain words on the page. The preparation and implementation of the guidance, however, has faced challenges. We know that there have been significant delays in updating the guidance. More importantly, 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.

I thank the Minister for Care, my hon. Friend the Member for Aberafan Maesteg (Stephen Kinnock), for writing to me yesterday to assure me that he has listened to those concerns, and that he is engaging with stakeholders and working with all relevant Departments to produce a second draft of the guidance, with a view to putting it out for consultation by the summer. My ask of the Minister is to ensure that the second draft of the guidance reflects the feedback raised by the National Down Syndrome Policy Group, the Down’s Syndrome Association and others. I am sure he will agree that we need guidance that is robust, inclusive, and reflective of the needs of the community it is intended to support.

Importantly, an accountability mechanism must be included to ensure that individuals and organisations responsible for the implementation are held to their obligations. Additional direction and training should be considered for external bodies to help them to understand fully their roles in effectively implementing the guidance in the first place. I hope the Minister will give due consideration to these points as the second draft is prepared.

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. To ensure that that is the case, I hope the Minister will agree, on behalf of the Minister for Care, to meet with representatives of the APPG on Down syndrome and the National Down Syndrome Policy Group to discuss and address our key concerns. By working together, we can create a future where people with Down syndrome are not only included, but truly empowered to reach their full potential.