Down Syndrome Bill

Ruth Edwards Excerpts

3rd reading
Friday 4th February 2022 Commons Chamber

[Ruth Edwards (Rushcliffe) (Con)]

I commend my right hon. Friend the Member for North Somerset (Dr Fox) on the Bill and on his long-standing championing of people with Down syndrome. I know it stems from his time as a GP, his personal life and his time in this place.

The Bill is making an important simple but necessary change to improve the lives of people with Down syndrome. The issue matters to many people in Rushcliffe. I have heard from many constituents and organisations such as the National Down Syndrome Policy Group in praise of my right hon. Friend’s action and willing me on to support it. I am proud that the Government are supporting the Bill and to speak on the issue today.

I understand that people living with Down syndrome, their carers and families can find themselves disadvantaged by the inequality of access and the provision of basic services. My hon. Friend the Member for North Devon (Selaine Saxby) has set out some really personal examples of how that is affecting her constituents today.

Starting at a young age, people with Down syndrome face greater challenges in school and in life than their peers. I know that many parents of children with Down syndrome worry about sending them into mainstream education, where support may vary wildly. Other parents are left facing the cost of specialist support where help is not available locally. As a Conservative, I want everyone to have opportunity and choice. For some, specialist education might be the right path; for others it might be support in a mainstream school. The point is that people need to have choice. They need to be able to choose their own destiny and, at the moment, there are too many people with Down syndrome who are not able to do that. I am so pleased that the Bill will start to address that inequality.

Shockingly, although people with Down syndrome are likely to be hospitalised more often and for longer periods of time than people without the condition, there is little guidance for NHS commissioning boards or trusts on how best to care for their specific needs. Adults with Down syndrome are likely to require social care and council support much earlier in life than the national average, yet local authorities do not have a standard playbook or guidance on meeting those needs. Because of that, young adults with Down syndrome often end up living in facilities with people several decades older than they are, with no specialist care available.

Local authorities already have a duty to provide support and carry out assessments of need to help them to meet that obligation, and the Bill will provide much-needed guidance on best practices to local authorities who are delivering healthcare, social care, housing and education-related services, helping them to understand and deliver on their duties. That work will make public amenities more accessible and inclusive for the Down syndrome community, and help them to lead active, healthy and more independent lives. It will also raise awareness among the wider public, giving them insight into the facts of living with Down syndrome.

Multiple organisations have welcomed the steps the Government are taking. The chief executive of disability charity Mencap described this as

“a positive step towards ensuring that the needs of people with Down syndrome are met.”

I know the Government are consulting on how the proposed guidance will look so that we can learn from families, communities and organisations that know best. As my hon. Friend the Member for Eddisbury (Edward Timpson) said, this is something that people need to feel is being done by them, not to them. It is so important that they feel that this is something that they are consulted on and included in, and that is driven by them. I look forward to seeing the outcome of the consultation.

I hope that what we do here in the Bill can serve as a model for future work and discussion on helping those with other neurodevelopmental conditions, making society more accessible and fairer for everyone. I want to reference the comments made by my hon. Friend the Member for Newbury (Laura Farris), who described that very well. I come from the cyber-security sector, where we have lots of people with neurodiverse conditions excelling in jobs. There is no reason why that cannot happen in many more sectors of the economy. I really hope that we can use the Bill as a launchpad for expanding the number of conditions that have guidance that public authorities need to take into account.

People with Down syndrome deserve the same access and choice to education, public institutions and services as anyone else. They deserve the same opportunities to lead a healthy, fulfilled and prosperous life, and I am pleased to support the Bill, which will help to make that possible. I very much hope that we will see it enacted for World Down Syndrome Day on 21 March.

[Mr Gagan Mohindra (South West Hertfordshire) (Con)]

Like others, I start by congratulating my right hon. Friend the Member for North Somerset (Dr Fox) on his important work in bringing the Bill to the House and on reaching Third Reading. Like my hon. Friends the Members for Eddisbury (Edward Timpson) and for North Devon (Selaine Saxby), we all know individuals with Down syndrome. My experience is similar to that of my hon. Friend the Member for Eddisbury: when I was growing up, living in the house next door was a young lad by the name of Mark, who was the great love of his parents, Tony and Carol. It just so happened that he had this condition, Down syndrome, but that was not a barrier to the fulfilment of his life chances. Unfortunately both Tony and Carol have since passed away, but I am aware that Mark is leading a very full life. He is in work, and I believe he has his own individual accommodation, although he may require support and has a large network around him.

Our role, as legislators, is to ensure that people are able to achieve their full potential, and also to strive to give them the confidence to be ambitious. We who have been brought up in this country are very fortunate, in that the barriers to success are very limited. As a second-generation immigrant, I still pinch myself to make sure that I really am sitting on the green Benches in the House of Commons.

My previous experience as chairman of the board of governors of a further education college, and also as a governor on the board of a school for young people with autism, has shown me directly that when we do things right, we do them really right. That means being able to say to people, whatever their status or condition, “Be good, be great, and be a real world leader.”

[Ruth Edwards]

My hon. Friend is advancing an excellent argument. Can he outline some of his experience of best practice on the board of governors, and of what works and is successful?

[Mr Mohindra]

That returns me to my hon. Friend’s own earlier comment. The skills required in certain industries may not necessarily be academic. I suffer from dyslexia and have always regarded that as a superpower, although I am sure that if I had been diagnosed at an earlier age, others might have regarded it as a disability. The ability to think differently, to be a disruptor and to question the status quo, which conditions of this type may typically entail, benefits us as a society, and—here I allude to the previous role of my right hon. Friend the Member for North Somerset in defence—it makes our country even more secure than it might otherwise have been.

My right hon. Friend is an astute and successful legislator, and I am personally reassured that his Bill will have a lasting impact, but as others have said, this is the start of a process and not the end. Today we are focusing on Down syndrome, but I think it would be easy to replicate this model for the purpose of other conditions. I believe that these measures should be adopted as soon as possible, and I look forward to the fulfilment of the ambition of my right hon. Friend to complete the Bill’s passage before World Down Syndrome Day in March. I hope that the Government can provide us with some confidence that that will be the case.

The role of politicians at whatever level, whether in local or in national government, frequently involves signposting. The provision of a named individual in the integrated care system will be a game changer for the families and loved ones who may not understand the bureaucracy of whatever public service they are having to deal with. The ability of a Member of Parliament to direct a constituent to a named individual with an email or other correspondence address can only help the system and make it smoother. Our role as politicians is to reduce the barrier, to make life as easy as possible for our constituents. The Government have a proud history in this regard, given the work we have done to date. We spent £2.6 billion over the 2021 spending review period on new school places for children with special educational needs and disabilities in England, and will more than triple the current capital funding levels to over £900 million by 2024-25.

I was not going to mention this, but I will, because I think it important. I read an article in the media today about a lady called Beth Matthews. She is a young lady of 22 who has achieved in her life: her story is important because she is now a model and she also happens to have Down syndrome. For me, that is an irrelevance, but people feel the need to show her as a leading light. Similarly, there is Tommy Jessop, an actor in “Line of Duty”. It is good that we normalise people with a condition, whether hidden or obvious. I look forward to the day when they are getting named not for their disabilities but for their ability and the fact that they are a master of their art.

[Ruth Edwards]

Does my hon. Friend agree that it is important to have role models from neurodiverse conditions in all areas of life, and that that will encourage others to believe they can also fulfil their ambitions and dreams?

[Mr Mohindra]

Absolutely; my hon. Friend is on a roll with her interventions and I look forward to more of them.

When I was growing up—I am sure others will have had a similar experience—I always looked at the TV screen, the media or the newspapers and asked where the people of my ilk had got to and what they had achieved. It can only be a good thing for people to be able to see others who look or sound the same as them being world leaders or industry leaders or social activists—people who change others’ lives.

Locally to me, I want to give a shout out to DS Achieve and its teamwork across Hertfordshire. I did a bit of research—unfortunately for my right hon. Friend the Member for North Somerset I was unable to be involved in previous iterations of this Bill—and reading its website and understanding what it is doing is reassuring: it is about people achieving their potential and not being regarded as just having a disability. There is lots of work going on—my right hon. Friend commented earlier about the expected lifespan now associated with this condition, which is to be applauded—but we need to make sure that we consider not just living but quality of life. This Bill goes hand in glove with that aim, ensuring a safety net of local councils and communities so that additional support is in place if individuals feel they need it. Others have spoken about the fact that people’s needs are different: different individuals will need support at different times in their life, and not all the time, and being able to dip in and out knowing there is a named person they can go to as a one-stop shop for support is a smart idea, so I applaud my right hon. Friend for his foresight.

--- Later in debate ---

[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.