Down Syndrome Bill

Douglas Chapman Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Douglas Chapman (Dunfermline and West Fife) (SNP)]

I thank the right hon. Member for North Somerset (Dr Fox) for not only initiating this important Bill but taking it to its Second Reading today. Many will be watching the debate, and the progress of the Bill, with great interest. Perhaps one of the reasons for that is that many people know people with Down’s syndrome, either as family members or relatives, or from their work in the community. They also know and appreciate the joy that Down’s syndrome children and adults bring to the community, the amount of love they give and what they contribute to their family, their school, their college, their workplace or their community.

I am a dad who would not change a thing; we have, in our son Andrew, a young man of whom we are very proud. While young people with Down’s syndrome can have superpowers—I believe they really do have superpowers—many need varying levels of support from their local NHS, their teachers, their education professionals and the local council to ensure that essential services such as housing, appropriate care and job opportunities are available to them.

The right hon. Member and many other Members have mentioned the voluntary sector and the support that it provides. I think there are many parents who would be quite lost if that support was not forthcoming from the voluntary sector. Let me give a special mention to Down’s Syndrome Scotland and, more locally in my constituency, Disability Sport Fife, which does a tremendous job to integrate people with a range of difficulties into sport. As I say, it does a fantastic job, and that needs to be recognised. No one said that being a parent is an easy job, but supporting parents and children who have that extra chromosome makes our society a better place, and this Bill will provide improved support so that lives can be lived with more ambition, fulfilment, independence, care and protection.

Finally, I thank the Government for their support for the Bill. I hope that, should it be passed, our colleagues in Wales, Northern Ireland and Scotland will look at it sympathetically and introduce equivalent measures across the UK. I wish the Bill Godspeed.

--- Later in debate ---

[Elliot Colburn (Carshalton and Wallington) (Con)]

I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on bringing forward this Bill, of which I am honoured to be a co-sponsor. I am equally delighted that the Government have given their backing to it, because it will make such a difference to the lives of thousands of people.

My right hon. Friend expertly set out why the Bill is needed in his opening remarks. I add my thanks to charities and organisations up and down the country, including the National Down Syndrome Policy Group, for their tireless campaigning. Indeed, it is because of campaigners, charities and families from my constituency that I came to co-sponsor the Bill and I would like to share their stories this morning. In particular, I thank Lucy Cooper and the fabulous team at Get on Down’s.

Get on Down’s is an amazing local group. I encourage hon. Members to come and visit or join me in Parliament Square this afternoon to meet some of their regular service users and families. It is a weekly support group for families who have young children with Down’s syndrome or a prenatal diagnosis of Down’s syndrome in the Sutton area, including Carshalton and Wallington. Its key aims in supporting families include assisting and supporting families who have a child with Down’s syndrome; providing a network of support; introducing them to other people in the same position; organising external speakers such as Portage, speech and language therapists, physiotherapists, the Down’s Syndrome Association and psds; and providing congratulations and pregnancy packs to local hospitals to ensure that new parents get up-to-date information about Down’s syndrome.

That last aim stands out starkly, because I have heard some frankly shocking stories from parents, such as that after being given a prenatal diagnosis of Down’s syndrome, many received no signposting, support or guidance. One parent even said to me that after being given the diagnosis, she was immediately handed a leaflet on termination with no other context provided.

I had the honour of going to a weekly Get on Down’s meeting to meet the service users, families, volunteers and, most importantly, the amazing children who go there every week. I especially want to thank the lovely Charlotte for taking the time to show me around, talk to me about her concerns and tell me more about her life. She told me about the things that spoke to her and that she was most passionate about. I had already agreed to co-sponsor the Bill by the time of the visit, but that really drove home to me how important the legislation will be.

I am a firm believer that nothing demonstrates the impact of what we regularly talk about in here more than going out and talking to those directly affected by it. Charlotte talked to me about the messages that the National Down Syndrome Policy Group was backing that spoke most to her. She told me that she felt that she deserved equality, opportunities, paid work and to be listened to. I could not agree more. I hope that the whole House will listen to her and the 47,000 people living with Down’s syndrome in the UK today.

As we have heard, people living with Down’s syndrome face significant challenges throughout their life. That was echoed in the conversations that I had with families at Get on Down’s and is particularly relevant when it comes to accessing public services including education, health, social care and housing. I will focus on the realm of education, health and care plans, because I have a stark example from my borough.

The families I met told me about their experience of trying to access services that actually reflect and meet their needs, which is sadly something that we have heard too often from families up and down the country—the London borough of Sutton is no exception. Almost every week, a parent comes to me who has a child with additional needs, whether that is Down’s syndrome or something else, and is struggling to access EHCPs in the first place or has managed to get a plan but it in no way reflects their child’s needs.

I give the caveat that Sutton has a particularly bad record and has had a lot of national media exposure, including as part of a BBC “Panorama” exposé. The reaction to the Bill from some in local government, which was supportive but laced with some scepticism, shows why the Bill is needed because it demonstrates that the provisions in existing legislation, such as the Children and Families Act 2014, were not being properly applied. Sadly, as parents have not had a Bill of this type, they have needed to go into battle with public services to access things that most of us would expect as standard.

The Bill is about so much more than access to education, health and care plans. Its provisions address the challenges that people with Down’s syndrome face throughout life by ensuring that there is guidance that relevant authorities must take account of when designing and delivering services. I emphasise again that while accessing services can be a struggle in the first place, even when services are provided, they can be far from appropriate for the needs of those they are supposed to be supporting.

[Douglas Chapman]

The hon. Member raises several pertinent points. This is about not just dental appointments, vaccinations and everything else that goes with what the Bill is trying to achieve, but changing attitudes. When parents are handed that bundle at the maternity hospital, they should not just get a leaflet: schools and support systems need to have it in mind that this is another child who deserves their attention and their professionalism. He makes that point exceptionally well.

[Elliot Colburn]

I am very grateful to the hon. Member for his intervention. I think I can highlight that point in even more detail.

One really shocking thing I have found through constituency surgeries is that, when parents come to me with copies of their children’s education, health and care plans, the children’s names are often incorrect on the plans, many of which are quite obviously copied and pasted. They are templates, and there is a standard form that is adjusted very slightly whenever a new plan is issued. That is not how to cater and deliver services for children living with Down’s syndrome, or, frankly, for any child who needs access to an education, health and care plan. The whole point of the legislation and such plans, as well as the point of the Bill, is to make sure that services properly cater for the individual and reflect their needs accurately.

I passionately support the Bill because it will give parents and people living with Down’s syndrome the legal backing of the state if they do need to go into battle. I support the Government in their approach to consulting those service users, and indeed those who will be delivering these services, when it comes to designing the guidance. I also put it on record that I agree with my right hon. Friend the Member for North Somerset that it is vital that the issue of redress is taken properly into account during the Bill’s passage so that we have that in place by the time it becomes legislation.

The testimonies of the families I have spoken to at Get on Downs, and that I am sure we have all heard from our constituents and families up and down the country who have been campaigning hard to secure the passage of such legislation, have been incredibly heartfelt. I have heard over and over again what a difference the Bill will make to their lives, or what it would have meant to them if they had had this kind of legislation in place when they were struggling. When I met Charlotte and the families at Get on Downs, they said they wanted to be listened to, and we have the opportunity to listen to them today, so I hope colleagues will join me in voting for the Bill, start the journey of putting it into law and help better the lives of the thousands of people living with Down’s syndrome in our country today.