Down Syndrome Bill

Debate between Ruth Edwards and Siobhan Baillie

3rd reading
Friday 4th February 2022 Commons Chamber

[Ruth Edwards]

My hon. Friend is giving an incredibly powerful account of her personal experience. I know that she works with many parents and people with Down syndrome. Does she think that support for new parents to come to terms with and understand the condition of their child has improved at all since her sister gave birth, or does she believe that we are still quite far off the mark?

[Siobhan Baillie]

That is a really important question. I think there have been improvements—my right hon. Friend the Member for North Somerset will attest to that—but there is still a lack of understanding and education. We have a real issue with people feeling that they need to have a termination when they are told about Down syndrome. There is a big campaign on not screening out children with Down syndrome, because they live very fulfilled lives and bring great joy to so many people. Education for all is really important.

--- Later in debate ---

[Siobhan Baillie]

I thank my hon. Friend for his contribution not just in that intervention, but in his speech. I loved the Shakin’ Stevens stories. I defer to his expertise as a former children’s Minister. That is why the Bill will do so much good. Even the fact that we are having this long debate today with so many colleagues is incredibly moving. I am pleased to see that the Minister is as equally moved as me and that it is not just me with the tissues on these Benches.

These problems have existed under multiple Governments, so parties of all political colours should hang our heads but also want to see improvements. We all know, from our surgeries and inboxes, that parents of disabled children who have to come to see their MP are often completely exhausted. They are exhausted by the fights to get things for their children that they know they should already have or have seen other children have. They also know that they have no choice but to continue fighting. I know that MPs of all political colours try to help, but we have to get better at getting the legislation and the policy right so they do not get to that stage.

The Government are trying really hard to make improvements to legislation and to the system and the practicalities for people with disabilities. The Minister with responsibility for disability, the Minister of State, Department for Work and Pensions, my hon. Friend the Member for Norwich North (Chloe Smith), is absolutely excellent and I have real confidence in her ability and commitment to secure change.

As part of my small role in trying to push through those changes, I sit on the Work and Pensions Committee, and we have been doing an inquiry into things such as personal independence payments. During the inquiry, we heard from an excellent representative from the Down’s Syndrome Association. She gave a few examples of things we can change that directly impact people with Down syndrome. She explained that it is usually the parents making welfare and disability applications.

We have heard today from a number of hon. Members that, thankfully, those with Down syndrome are living much longer. Their life expectancy is no longer 30 years, but 60 years. That means that their parents are also significantly older, and we must bear that in mind. The constant drive for digital-only application is welcome in many respects and will mean there is a record, so hopefully we will not have the constant losing of paperwork that many families have to deal with. However, there are many elderly families and elderly parents who cannot cope with that, and we must build that into our systems.

Separately, there is a new in-person assessment approach to PIP, which can throw up some interesting results—unintended, in some cases. Where previously a family could sit down and do a written submission about what they needed and what they wanted changed in their PIP, doing an in-person assessment is very reliant on the person with Down syndrome.

My nephew Rhys’s favourite word is yes, because he gets a positive response to it. If someone says to him, “Do you play for Reading Royals?”, he will say yes. “Do you run for a bus?” He will say yes. One thing that my sister said made her nearly jump up and down was something like, “Do you have your own life partner or girlfriend?” He was saying, “Oh yes, oh yes.” She said, “No, no, no! He absolutely doesn’t.” We must bear that in mind when we create those policies and programmes, because it will not always work for everybody.

I welcome all the focus on and learning about people with Down syndrome today. I am still learning—I think we all still need to learn from people with Down syndrome and listen to them.

[Ruth Edwards]

I hope Madam Deputy Speaker will forgive me, given the circumstances, but I have just been interrupted by a text message from my constituent Matt Barney, a hardworking councillor in Leake and Ruddington. He tells me that his cousin, Heidi Carter, is with us today in the Public Gallery. She has Down syndrome and campaigns to reduce the age limit at which abortion of babies with Down syndrome is permitted. I wanted to take this opportunity to thank her for all her work and to welcome her here.

[Siobhan Baillie]

I am grateful for that intervention. I am thrilled—I have seen you listening intently, and it is wonderful to have you here today, Heidi.

I will draw to a close, but I believe we must all learn from people with Down syndrome. We will genuinely be a better society for having done so. I commend my right hon. Friend the Member for North Somerset and I thank charities such as the Down’s Syndrome Association—there are many charities that I should have had a big list of, and I apologise that I do not. I also love the Down Syndrome Swimming GB Twitter and Instagram accounts, and enjoy following them.

I thank the Government for listening and taking action. I look forward to seeing this Bill progress to Royal Assent.