Down Syndrome Bill

Debate between Siobhan Baillie and Edward Timpson

3rd reading
Friday 4th February 2022 Commons Chamber

[Siobhan Baillie]

Absolutely. That is so important. When I reel off this list, if I can get through it, Members will understand why it is so important.

I have seen my little sister battle for understanding about Down syndrome. I have seen her battle for the right to medical care for operations in a timely fashion. She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from Rhys being a child to an adult, and she is still doing that. She has battled to get the council to complete the required assessment. She has battled with the welfare system and disability living allowance appeals. She has battled with endless application forms and then had to re-do them because they have been lost by various authorities and had to start all over again. She has battled during covid. I know that a lot of families battled really fearing for their loved ones with Down syndrome, who are vulnerable, often with respiratory issues. Covid was thrown at all of us, but we found that parents were being ignored, or certainly felt they were being ignored, and not prioritised for vaccinations. The whole family was not being prioritised for vaccinations to protect the people with Down syndrome in their homes.

[Edward Timpson]

I think all of us are very moved by what my hon. Friend has had to say. Does she agree that her point about the battles she described demonstrates how important it is that, as the Government develop the guidance—I know my hon. Friend the Minister will very much have regard to this point—they involve the experiences, views, opinions and, I suspect, recommendations of those who have Down syndrome, or their parents, carers and supporters, so that they form the best possible guidance to deliver the right type of support at the right time and in the right way? That might then mean that those battles are much reduced and hopefully eradicated in future?

[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.