Down Syndrome Bill

Jo Gideon Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Jo Gideon (Stoke-on-Trent Central) (Con)]

We have had some amazing contributions today. First, I obviously thank my right hon. Friend the Member for North Somerset (Dr Fox). This is an incredibly important Bill. At the beginning of the debate, he said that the narrowness of the Bill was important to getting it through as a private Member’s Bill, and I want to reflect on that.

I have my own private Member’s Bill, the Button Batteries (Safety) Bill, for exactly the same reason: when we talk about protecting the vulnerable, sometimes we have to be very specific. Following the tragic death of Harper-Lee Fanthorpe at the age of two after swallowing a button battery, I hope my Bill will protect more children by making parents, carers and others aware of the dangers. I was lobbied by others to broaden my Bill to include things such as magnets, because they are also things that young children ingest. The more vulnerable the children, the more likely they are not to recognise the dangers of things such as button batteries, so I have been campaigning long and hard on that important issue.

I recognise that it is important to focus on the key issue. In this case, that is the rights of people with Down syndrome, and my right hon. Friend the Member for North Somerset makes a very good point about life expectancy. I do not know whether Members saw “Call the Midwife”, where it looked at how Down syndrome was viewed back in the ’50s and ’60s and how far we have come in understanding and on life expectancy. It means we have to protect, as well as ensuring that there is much better preparation, I guess, for a longer life—and that preparation starts in school. As chair of the all-party parliamentary group on youth affairs, I have looked at the issues with education. Sadly, only one in four young people with Down syndrome finds themselves in mainstream education.

[Mr Mohindra]

My hon. Friend mentioned APPGs. Does she agree that the role of APPGs is important in ensuring that we have an informed debate? They give colleagues and professionals the platform to go in depth into topics, so that when we are discussing them in this place we come from a position of experience and knowledge.

[Jo Gideon]

I absolutely agree. The key thing is that APPGs by their very nature are cross-party. On issues such as those we are discussing today with this Bill—this is a cross-party topic—the more that we can find consensus, the better it is for the people we represent.

Looking at schools, the Bill asks for a curriculum tailored more towards children with Down syndrome and for more teachers to be trained to understand how to teach children with the condition and the specific learning profiles of that condition. It is a fact that Down syndrome pupils in mainstream schools achieve on average at two years above the academic level of those in special schools.

Having said that, there are some fabulous special schools, and I want to give a shout-out to Aurora Hanley School in Bucknall in my constituency. There is some wonderful work going on. I also want to mention Stoke and Staffordshire Down syndrome social group, who have posted a lot about this issue. They meet regularly at the Bridge Centre in Birches Head, and they make a difference to about 50 families. It is a massively important contribution that everybody can make.

[Dr Fox]

Is the very point that my hon. Friend makes about the lack of knowledge one of the key reasons why the amendment to the Bill is so important? It will mean there is a named individual on the integrated care board who can act as an advocate, but also spread knowledge to other members of the integrated care process about the condition and the needs and wants of those involved.

[Jo Gideon]

My right hon. Friend makes a hugely important point. The integrated care boards will have a huge amount of responsibility for care across the board, and the understanding of the specific needs of those with Down syndrome requires a named lead. It is essential, because otherwise, sadly, the detail may get lost in the breadth of what the boards have to cover.

[Brendan Clarke-Smith (Bassetlaw) (Con)]

My hon. Friend mentions education and ensuring that those with Down syndrome have access that is adequate for their needs, whether in a special school or a mainstream school. Does she agree that it is vital that these choices are offered and that parents and people are fully informed of what is available for them? It is important that we provide a choice that is the best for their needs and that we make sure it is available to them?

[Jo Gideon]

My hon. Friend is absolutely right. All the statutory authorities need to understand that the statutory duty in this Bill will require them to provide guidance and a level playing field for people with Down syndrome.

[Edward Timpson]

As a fellow member of the Health and Care Bill Committee that looked at the new integrated care systems that are being introduced, my hon. Friend will know that they have been delayed slightly until April this year. Does not that present an opportunity for the Minister to write to all the chairmen and chief executives of the interim boards, or those who have been appointed to the new interim care boards about the Bill; and, hopefully, for them to act in due course so that they are prepared for the guidance that is coming and can inform the wider board about that at the earliest opportunity?

[Jo Gideon]

I thank my hon. Friend. It is absolutely right that the integrated care boards and the Health and Care Bill need to accommodate what is suggested in this private Member’s Bill. The integrated care boards, as I have said, will have a huge breadth of responsibility. Unless we are quite specific on certain duties, they may get lost and that cannot be allowed to happen.

[Jonathan Gullis]

I would like to associate myself with my hon. Friend’s comments regarding the fantastic organisations based in the great city of Stoke-on-Trent. I give a particular shout-out to Watermill School, based in the Stoke-on-Trent North, Kidsgrove and Talke area, which is being extended as part of a £7.5 million refurbishment to increase our SEND provision in the city, which is sorely lacking at present.

My hon. Friend specifically mentioned the education of teachers. As someone who spent eight and a half years in the teaching profession in state schools both in London and in Birmingham, I am sad to say that, at no stage, as a head of year or as a frontline teacher, was I ever given training about engaging with and looking after a child with Down syndrome. In fact, with some learning needs, the teacher would have that conversation only if they had a child in their class or year group with that learning need. It is simply not right, and nor is it fair on those young people, who deserve to have their full potential unlocked. Does she agree that, as part of the legislation that my right hon. Friend the Member for North Somerset (Dr Fox) is putting forward—this fantastic legislation—we need to have a serious conversation with the Department for Education, working with local authorities, not just about what type of training is done at the start of term or when a student enters a school, but about how the continuous training and development of teachers happens all year round?

[Jo Gideon]

I thank my hon. Friend. I absolutely agree. I think we need to look at the whole pathway from education to work, as we said earlier.

I would like to mention a very interesting and important project that I was involved with a few years ago in a very isolated community in the Brecon Beacons called Myddfai. The challenge was to create sustainable employment and regenerate a very isolated village. As part of the project, we created a trading company, and within that trading company we were able to employ a number of young people. I am glad to say that, eight years on, there are still young people employed there today, some of whom have Down syndrome. Members can see if they look on the website, myddfai.com, how happy they look in the photographs. It is really satisfying to see how the right employment can fulfil.

[Lia Nici (Great Grimsby) (Con)]

My hon. Friend is making an excellent speech. Talking about employment, does she agree that this landmark Bill identifies that people who have Down syndrome have specific needs and that employment is a vital part of everybody’s life, as is having rewarding, independent living and good employers? We need more employers to consider people with special needs.

[Jo Gideon]

My hon. Friend makes a good point and we touched on it earlier. An understanding of what support is needed specifically is probably not good enough in the world of employment, education and local authorities as statutory providers. What this Bill will do, I believe, is put a duty of care on everybody, but also a duty of education. In my experience, employers genuinely want to be helpful to everybody in their communities, but there is a role for all of us to play in understanding what additional support might need to be provided to people with Down syndrome. I am sure that there are good local examples, but it is challenging for employers if they do not have that knowledge. We should consider that as part of the duty to develop personal development paths for young people with Down syndrome.

[Lia Nici]

What my hon. Friend says is vital. Does she agree that Members of Parliament are well placed to be that conduit with education organisations and employers to help and guide them, and to give them confidence in how to get help to ensure they can employ and support people with Down syndrome in their workforce?

[Jo Gideon]

I entirely agree. We are in an incredibly privileged place to highlight that need and to work with those who will help us take forward this massively important agenda. I congratulate my right hon. Friend the Member for North Somerset on his Bill.