Down’s Syndrome

Rachael Maskell Excerpts

Wednesday 19th March 2025 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to see you in the chair, Mr Turner. I congratulate the right hon. Member for Beverley and Holderness (Graham Stuart) on securing this debate. The Down Syndrome Act is simple, but brilliant—but it is powerless without the guidance to accompany it. That is why this debate is timely.

I also call it timely because the elements of the Act determine the very structure that can support a child through to adulthood, from birth through to work. The Act depends on three main pillars, the first of which is healthcare. At this time, we are putting in place a 10-year NHS plan, putting together the NHS of the future, and looking at how we can keep ourselves well; we are putting in early intervention measures and ensuring that we have the workforce needed in the future. If this guidance is to have effect, we need the workforce and the structures to support individuals and their families. Now is the time to look at that and to put in the additional screening and support that a person with Down syndrome needs to optimise their health and keep well throughout their life.

The second pillar is that we are having a massive review of the education system at the moment. We are looking at curriculum change, recognising that the broadening of the curriculum will be much more inclusive. As we review SEND and the whole education system, it is timely to bring in this guidance. It cannot just be guidance around Down syndrome looking in; it must be looking out at other Departments. Again, the time is now. Look at the data: the figure of 80% of children with Down syndrome attending primary school drops to between 25% and 37% in secondary school. That deficit in itself indicates that we need significant change in our education system. We need a schools system that is nurturing, therapeutic and integrated, so that no child feels on the outside of the education they are rightly entitled to.

The third pillar is the place of work. We need to ensure that there are more opportunities for people with Down syndrome to engage in the labour market. Just yesterday, the Government published their plan “Pathways to Work”, which I see as a plan in two halves. The first half will enable more people to access the labour market, to follow the career of their dreams, and to have their skills and talents recognised. We need to ensure that everybody with Down syndrome has that opportunity where it can be afforded—if not in a formal workplace, by volunteering in the community or being able to have the most life-enhancing opportunities available to them. When I talk about the second half of the plan, I have deep concern for people with Down syndrome, looking at the proposed thresholds for personal independence payment in which people will have to score at least four points to meet the threshold to access vital funding to keep them independent —the key word in personal independence payments. We need to ensure that we feed into that debate.

When we get this right, it will be for the benefit of the whole of society. In York, I think of those people who work in West Offices, where the café is run by United Response and provides real work opportunities, and of the Once Seen theatre company, where I see such talent on display. We must get this guidance—

[Karl Turner (in the Chair)]

Order. I call Bobby Dean.