Down Syndrome Bill

– in the House of Commons at 12:09 pm on 4th February 2022.

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Bill, as amended in the Public Bill Committee, considered.

Third Reading

Photo of Liam Fox Liam Fox Conservative, North Somerset 12:14 pm, 4th February 2022

I beg to move, That the Bill be now read the Third time.

May I begin by thanking Members on both sides of the House for the support that they have given the Bill from the very outset? There are not many things that justify the downsides of being a Member of Parliament, but this is certainly one of the upsides—when we can see what will inevitably be a crisis emerging and do something about it in due time. That is one of the privileges given to us, and I am grateful to Members for their support in taking the Bill forward. They have not only supported it here in the House but advocated for it outside the House, where it has become one of the best-known private Members’ Bills in recent times in terms of public awareness of what is happening. That matters a great deal, because the Bill is not exactly the same as it was when we considered it on Second Reading—a subject that I will come to in a moment.

The most common question that I am asked is, “Why have you been so concerned with this issue?” I explained on Second Reading that when I was growing up, the boy next door to me had Down syndrome. As a GP, I saw a number of those with Down syndrome and their families, and I saw the difficulties that they encountered. We regularly see one of my friends in my constituency, where I live, whose son Freddie has Down syndrome. As Members of Parliament, we have all recognised that having someone in the family with Down syndrome is not just a single problem to be dealt with; it is a conglomeration of problems. Families find themselves fighting on a number of fronts to get the quality of care that, frankly, they already have a right to. For me, that was why we needed a separate Bill.

All Members will have had letters asking why the Bill could not have been wider—why we could not have included more conditions in it. I suppose there are two answers to that. The first is that private Members’ Bills have to be short and concise if we are going to get them through. Let me be very frank: getting a foot on the ladder of legislation in areas such as this is crucial. If we reach for too much in a private Member’s Bill, we can end up with zero. I think we have set the appropriate level of ambition in this Bill.

We also have to recognise the complications that come with an extended Bill when it comes to the view of the Treasury. Many years ago, I was in the place of the Lord Commissioner of Her Majesty’s Treasury, my hon. Friend Rebecca Harris. It is definitely a case of gamekeeper turned poacher, but you learn a great deal as the gamekeeper for when you have to be the poacher later on when it comes to private Members’ Bills. I put on the record my thanks to her for her help. The role of the Friday Whip is not well understood outside Parliament, but when they are on your side, they can be very powerful allies indeed, and her support is very much appreciated.

We also wanted the Bill to be separate because it is about a definable group in the population. Down syndrome is not something where there is any dubiety about the diagnosis and, as I said, there are complex identifiable needs. For example, we know that those with Down syndrome have a higher level of issues such as congenital heart disease, they have a higher instance of leukaemia, they have myriad ear, nose and throat problems, and the earlier they are dealt with, the better. It is difficult enough for parents to be fighting waiting lists and fighting to be regarded with sufficient urgency; if they are also dealing with the education system and trying to get help for a learning disability, that is an additional problem.

The successes in medical care are the main driver for the Bill. When I was growing up, that boy next door had a life expectancy of 15 years. When I became a doctor in 1983, the life expectancy was about 30. Now, it is about 60. We should all be extremely grateful for that, but, as ever with advances in medical science, it brings its own problems. The problem, if we want to see it as such, is that parents will have this extra worry: “What will happen when I’m not there?” That is why I referred at the very beginning to a perfectly identifiable crisis that is on its way to us. If we actually take measures now, we can prevent individual tragedies. If there is a real justification for Members of Parliament having their own constituencies and dealing with real people, rather than being creatures only of a political party, it is that constituency link, which tells us about problems that need to be addressed and gives us the early warning sign to pass legislation to be able to deal with them. The complexity of the issues is one reason why we need separate legislation and why we had to bring different provisions into the Bill as it comes back for Third Reading from when it left the House after Second Reading.

Photo of Ruth Jones Ruth Jones Shadow Minister (Environment, Food and Rural Affairs)

The right hon. Member is making such a powerful point. He and many other Members have had numerous letters questioning the narrowness of the Bill. Will he reassure us that this is only the beginning and most definitely not the end of the process?

Photo of Liam Fox Liam Fox Conservative, North Somerset

Indeed. I would not even say it is the end of the beginning. It is on the way to being the end of the beginning, but this will be a perpetual battle. So long as medical science is able to make advances in genetics and immunology, this process will continue into the future and we will need to look at it. It is worth pointing out, to answer the hon. Lady’s question more directly, that we considered this in Committee. The Minister for Care and Mental Health, my hon. Friend Gillian Keegan, made it clear that in the guidance that will be issued, which I will come to in a moment, it is entirely possible to deal with the effects of other conditions that may have the same effects as those emanating from Down syndrome. In a way, yes, we are starting the process, and the way in which we change the Bill is absolutely key to that.

On Second Reading, I think it is fair to say, because we can be a little self-critical, that this was a well-meaning Bill that went as far as we could. However, I made it clear that one big issue was missing—the enforcement of rights. It is all very well to make available new provisions and rights in law, but if an individual or parent does not have the ability to enforce those rights, if there are no mechanisms or levels to pull to enable them to get the full benefit of what the legislation supposedly gives them, ultimately we are failing to achieve what we want. We discussed two major issues. I purposely left them out of the Bill on Second Reading because we were not ready. There is nothing worse than poorly-thought-out legislation that we have to come back and amend. It is far better to think the process through, get agreement on both sides of the House and with the Government, and then proceed on the basis of unanimity, as happened in Committee.

The changes were essentially twofold. The first was getting agreement from Ministers that they would issue guidance to local health and education bodies and planning authorities to ensure that healthcare, education and long-term care issues would be properly taken into account. That was a major step forward. Again, it answers the question of how we can broaden the effects of the Bill, even with measures that are not in the Bill. That means looking at other conditions that will face the same problems as created by Down’s syndrome. However, that agreement created its own parliamentary problem for us, because as those who listen to debates in the other place will know, guidance issued by Ministers that is not laid before Parliament creates a potential democratic deficit. That is why I think it was the first major step forward for the Bill in Committee when the Government agreed not simply that the Minister would issue guidance, or that that guidance could apply directly to the various bodies concerned—another important step in itself—but that that guidance would be laid before Parliament.

Up to that point, I had considered whether we needed to put a sunset clause in the Bill, to have it completely reviewed to see whether it worked in practice. The fact that the guidance will be laid before Parliament enables us to look in real time at what is happening, including parliamentary Committees looking at how the guidance actually works. That is a huge step forward. I think it is actually precedent-setting and turns this from a nice Bill into a cutting-edge and meaningful Bill. That is a huge achievement and one thing for which the Bill will be most remembered.

Photo of Craig Williams Craig Williams Conservative, Montgomeryshire

I pay huge tribute to my right hon. Friend for bringing forward the Bill and the manner in which he has done so. On the territorial extent of the guidance, as a Welsh Member of Parliament I pay tribute to him, but he will know far better than I, given his length of service in this place, that the Bill’s territorial extent is England only. The Minister has alluded to working with devolved counterparts, but may I ask him to use his passion and experience to urge the devolved Administrations to follow suit?

Photo of Liam Fox Liam Fox Conservative, North Somerset

I thank my hon. Friend for that question. It will not surprise him to hear that, as a committed Unionist, I will come back to that. We need to consider the quality of life of all citizens in the United Kingdom, not just those for whom we are directly legislating today.

I turn to the second element of precedent-setting changes that we made to the Bill in Committee. As we move to the new integrated care structure in the health service, we will have a named individual on the integrated care boards responsible for the application of this legislation, should it receive Royal Assent. That really matters, because those who have Down syndrome, their parents, their families and communities will know who in the new structure is responsible for ensuring that the guidance issued by Ministers is given effect on the ground. I think that even the direct application of ministerial guidance—as it would have had—and parliamentary scrutiny would not have been not quite enough to guarantee the effect of the Bill’s provisions where it really matters.

That is precedent-setting. I doubt very much whether this will be the only occasion on which my hon. Friend the Minister has to consider representations for named individuals to take responsibility, but I take great pride in the Bill being the first, because I think it is a major step change from what we have had. It will give the new integrated care plans the idea of responsibility for their application to named individuals, which gives us a point of pressure in the system that did not otherwise exist.

Finally, I turn to the Bill’s application to one part of the United Kingdom. At the beginning of the legislative process, we had a choice. We could have set out a United Kingdom Bill and challenged the Governments in Scotland, Wales and Northern Ireland for legislative consent orders. We could have said, “We dare you not to have the same provisions.” However, that would have become a debate about devolution, not Down syndrome, and I passionately wanted the Bill to focus on the needs of those with the condition and not become an argument about Government process or our constitutional relationships.

Having said that, I completely take the view that a person with Down syndrome should not have fewer rights in one part of this United Kingdom than in any other. The Bill is making speedy progress through the House. I hope that it will make speedy progress through the other place and that, hopefully, it can get to Royal Assent before World Down Syndrome Day on 21 March, at which point we would be the only country to have legislated for it. That is important for our concept of global Britain, which cannot be just about trade, defence or economies; it must also be about our values, and I can think of no clearer signal to send than to legislate on this point.

I say to those in charge of the legislative programmes in Wales, Scotland and Northern Ireland that it is unthinkable that people with Down syndrome living in those parts of the United Kingdom should have fewer rights, or rights applied at a later date, than those in England, for whom we are legislating today. When it comes to health, it is the duty of all those who run those devolved parts of the United Kingdom to ensure that everybody in the UK, irrespective of where they live, gets the same access at the same time to the changes to which we are giving effect today.

This Bill began with great intentions, and ends now as a landmark Bill. It recognises that, in the provision of services, whether in health, education or long-term care in this country, Parliament will give not only rights, but applicability and enforceability of those rights in our systems. That is a change in the whole way in which we think about such legislation in this House.

I am very proud to have been the mover of this Bill; as the mover of the Bill, I am also very moved by the support that has come from every party in the House of Commons and from the Government. I thank all my colleagues and, with your indulgence, Madam Deputy Speaker, I may be able to thank some others who have been instrumental in the progress of the Bill a little later.

Photo of Edward Timpson Edward Timpson Conservative, Eddisbury 12:30 pm, 4th February 2022

It is a real pleasure to follow my right hon. Friend Dr Fox, who, in a more modest way than I normally remember, has established an important part of what has made this Bill possible: his energy, enthusiasm and drive to get it to this stage in this shape and at such speed.

Many of us in this House will have different personal and professional reasons for supporting this Bill. For me, I must go all the way back to the early 1980s: believe it or not, I was alive and about seven or eight years of age. My parents had started fostering a few years before, and ended up doing so for about 30 years. During that period from the early ’80s to the mid-’80s, we as a family looked after Down syndrome babies, who came to live with us for weeks and sometimes months. We also offered respite care once a month for a long weekend for a Down syndrome boy in his early teens, to give his parents a much-needed break from an incessant and stressful time. Despite the love they had for their son, they needed a pressure valve in order to maintain their ability to look after him and keep their energy levels up.

We were as happy as could be to provide that respite care. I recall it vividly, because it captured some of the most enjoyable images of our time in fostering. I recall many occasions with that young teenager, who had a couple of obsessions that infiltrated our household. The first was with the recording artist Shakin’ Stevens, who I am sure is also a favourite of all those present. That young boy was a fanatic follower of Shakin’ Stevens, and whenever he came to join us for a weekend, the first thing he would do was to put on our Shakin’ Stevens tape, and we would all dance together in the kitchen with real abandon. I remember it as an extremely happy time.

That teenager was also fixated on the wrestling on “World of Sport” with Dickie Davies on a Saturday morning. He used to sit very close to the screen, because he did not have great eyesight, but he was transfixed by the bouts that were shown. Often, an hour or so would go by and he would not have moved.

There was one scarier moment when we took him to a local swimming pool, where he was very keen to put on a mask and snorkel, go underwater and have a go at swimming. Unfortunately, it became apparent very quickly that he could not swim, so someone who was on duty had to jump in, fully clothed, and rescue him. However, the fact that he wanted to do those things and that he was given the opportunity was important, because, as my right hon. Friend said, we must ensure that the rights people with Down syndrome have are the same as for everybody else. That includes all those opportunities that we come across in our lives.

That experience has led me to want to speak to the Bill—unfortunately, I was not on the Committee—as I am extremely supportive of what it seeks to achieve. There is clearly a lot of crossover between the reforms to the special educational needs and disabilities system, which I brought forward as children’s Minister, and this private Member’s Bill. As a learning disability, the estimated 47,000 people who have Down syndrome will potentially benefit from that system.

The diagnosis will come extremely early in people’s lives, so there is no reason why an education, health and care plan cannot be put in place as early as possible. A focus on outcomes, whether educational, social or employment-related, can be built into those plans, which can go up to the age of 25. As we know, the life expectancy of those with Down syndrome has increased dramatically from the days when we were looking after Down syndrome children, so there is every reason to ensure that those outcomes are brought to fruition.

In publishing the guidance that the Bill brings in, there is an opportunity to ensure that the reforms to the special educational needs and disabilities system, particularly to the code of practice and the local offer that must be published in every local area to explain the services available for those with special educational needs and how to access them, marry up with what is already out there. That will ensure that there is a clear pathway for parents and carers to know what is available and how they can access it.

The level of support that those with Down syndrome need throughout their lives will vary considerably. It is important to remember that they are people with different individual needs, although there are certain services that they are more likely to need than others, such as speech and language therapy, physiotherapy or optician or hearing specialists. Therefore, the Bill is an opportunity to pull together the different routes to accessing key services.

It is vital, however, that those children, young people and adults with Down syndrome have a sense of agency and that they feel that those things are being done not to them but with them, so that they have a stake in their future. For example, with the increased life expectancy of those with Down syndrome and some outliving their parents, they are having to be cared for by other means. There are recent instances of people ending up in an elderly care setting that is not necessarily as appropriate for them as it could be, which may have stymied the possibility of them reaching out to a more individual lifestyle and having support in the community.

The Bill presents an opportunity to ensure that the guidance reflects the fact that those with Down syndrome need to be very much part of what they need for their future, so that the services that are built around them reflect that and ensure that the outcomes that they know they are capable of are reached. Although we have the Equality Act 2010 and the reasonable adjustments that go with it, they need more focus and definition through this Bill, for all the reasons that the Down’s Syndrome Association has illustrated so well in the case studies that it set out and that show the difference that will make.

I accept the point about other conditions, but doing all that will provide a blueprint for how each individual person, irrespective of their condition, can be provided with guidance, support and wraparound services. We need to use the Bill as a way to demonstrate our commitment not just to those with Down syndrome, but to all those living with a learning disability for whom we know we can do better by bringing together the services that already exist more effectively. With medicine and our understanding of conditions improving, we can ensure that the way that we build services reflects the needs of all those who require them.

I am hugely supportive of this Bill, for the personal and professional reasons I set out, and I very much hope and expect it will make a significant difference to many lives. It truly is the landmark that my right hon. Friend the Member for North Somerset suggests.

Photo of Selaine Saxby Selaine Saxby Conservative, North Devon 12:40 pm, 4th February 2022

I congratulate my right hon. Friend Dr Fox on introducing this Bill.

It is always a pleasure to speak on a Friday, when, Ruth Jones is right, we have an opportunity to get things done. We come together as one. As her fallen colleague, Jo Cox, said in her maiden speech, we have

“far more in common than that which divides us.”—[Official Report, 3 June 2015; Vol. 596, c. 675.]

Today, many colleagues have referenced our fallen colleague, Sir David Amess, which is so timely the morning after the election of his successor for the city of Southend; we all look forward to welcoming her to the House next week. We hoped it would usher in an era of kinder politics and I just hope that will be mentioned to the people who wrote the emails in my inbox today.

It is a great delight to have the opportunity to hear my right hon. Friend the Member for North Somerset speak with such compassion on such an important issue, and to have the opportunity to speak today. I share a friend with him in Annabel Tall, the mother of George, Freddie and Samuel. Freddie has Down syndrome. I believe Samuel is waving at us from the Public Gallery and is here to see the Bill go through, and I think Annabel is watching on television.

This is a big moment. As my right hon. Friend said,

“this Bill is not about a condition, but about people—people who have a particular condition, their families, and the people who care for them.”––[Official Report, Down Syndrome Public Bill Committee, 26 January 2022; c. 10.]

Annabel wrote to me earlier this week to explain why the Bill is so important to her family. She finds it

“disheartening to see new parents and carers having to fight exactly the same battles we were 20 years ago.”

She describes it as a

“spectrum of different difficulties and abilities with common themes. I have lost count of the number of times I have had to explain Down syndrome to professionals who should know, let alone friends and family who still largely base their Down syndrome stereotype on the last person with Down syndrome they met.”

I was very fortunate as a teenager. Despite not having the same family experiences, I helped at a Down syndrome support group with a large number of Down syndrome infants, from tiny weans and right the way through. They had marvellous day trips. I was not even a woman at the time and, as a young girl, it impressed on my mind how important this is.

I very much hope the Bill is the start of a journey for people with other conditions as we move into the integrated care system, so that we are able to do exactly what my right hon. Friend intends. The Bill aims to improve services and life outcomes for people with Down syndrome, but hopefully we will be able to help and assist people with so many more conditions.

I will keep my remarks brief, as I know many colleagues wish to speak. I thank my right hon. Friend for all his work in this area. It is a privilege to speak today.

Photo of Laura Farris Laura Farris Conservative, Newbury 12:43 pm, 4th February 2022

I begin, as others have, by congratulating my right hon. Friend Dr Fox on this truly groundbreaking Bill. I will add a few reflections of my own, the first of which dovetails with his remarks on Second Reading.

Our understanding of and respect for people with Down syndrome and equivalent conditions have evolved so much in my lifetime. Forty years ago, people with Down syndrome or something similar were viewed as problems to be managed, rather than people with potential to be realised. Employment, if it existed at all, was seen as an act of charity, rather than an opportunity for a person to be productive or to be in a role in which they could develop and thrive. The idea of someone with Down syndrome having a personal intimate relationship was taboo. It is amazing to think how far we have come. We have a far greater understanding not only of developmental conditions but of how they can exist on a spectrum. There are far more opportunities for education, employment and training. So many excellent employers in Newbury employ somebody who has a learning disability, but I want to give a particular mention to a young lady with Down syndrome called Karen who is doing a fantastic job and loving life at Nando’s in Newbury. The Bill recognises the specific challenges, particularly with health and care, but squarely places them alongside recognition of the dignity of people with Down syndrome and the idea that their families should not be scrubbing around for care and that that should be dependent on the provision of their local authority.

While I was preparing my speech, I thought about how far we have come in Parliament in what we say about disability. The Disability Discrimination Act 1995 and the Equality Act 2010, particularly the latter, contained important provisions about disability, such as the duty to make reasonable adjustments, which was mentioned by my hon. Friend Edward Timpson. It is notable that the focus in the interpretation of both Acts was on physical disability, long-term health conditions such as cancer, or mental conditions such as schizophrenia or depression.

I know that I am right, because I refreshed my memory of the statutory guidance published to go with the Equality Act to see what it said about disability. It is an extensive body of work on just the subject of disability, running to 60 pages and giving example after example of how society should respond, and there is not a single reference to Down syndrome and scant reference to any form of learning disability. I mention that not to minimise the significance or value of the Equality Act, but to point out that we as a society have been reluctant to confer on public authorities, employers or anyone else much in the way of positive duties on learning disabilities. If we are honest with ourselves, we know that we would be nervous to say very much about learning disabilities at all. I applaud my right hon. Friend the Member for North Somerset for taking the bull by the horns and presenting the Bill.

I want to conclude with remarks on two points that have been made by other Members but are important. The Bill will receive Royal Assent, but it is right that we should not ignore all the other people with learning disabilities, particularly when there is an intersection with health concerns and a need for ongoing adult social care. I have a niece who falls into that category, and she was in special needs education throughout her younger years. The majority of her co-pupils had Down syndrome, so it is fair to say that she was considered by the authority to have something similar. She is now a young adult who has had significant challenges with her health and some of her communication abilities, but she has a job and a very busy social life and she is living a really productive life. A lot of the issues the Bill seeks to address apply equally to her and to thousands of others. The difficulty is in the definition, and finding statutory language that would correctly encompass all those conditions is technical and challenging—I do not resile from that. Of course I respect the ambit that my right hon. Friend chose for his Bill, but I must put on record my ambition that it will go wider and that we will see soon progress from the Department.

Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe 12:48 pm, 4th February 2022

I commend my right hon. Friend 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 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 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 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.

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire 12:54 pm, 4th February 2022

Like others, I start by congratulating my right hon. Friend 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.”

Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe

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?

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

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.

Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe

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?

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

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.

Photo of Edward Timpson Edward Timpson Conservative, Eddisbury

I am enjoying my hon. Friend’s speech and agree with his comments. Does he agree that in the past too often the default position for those with Down syndrome as they grew up was to envelop them in cotton wool and not give them a chance to grow and develop and demonstrate what they are capable of with the right support in place? The societal attitudinal change coupled with this Bill presents an opportunity for them to demonstrate, as we have seen on our TV screens and elsewhere in the media, that they can have a successful career and loving and meaningful relationships as long as we ensure, as we would for anybody else with a condition or difficulties in their lives, that they have the support and networks in place to be able to progress. In the past, those with Down syndrome have potentially been seen as simply to be managed, as my right hon. Friend Dr Fox said in his opening speech.

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

My hon. Friend speaks from a position of significant knowledge and is absolutely right: the culture change both in the community and in the public bodies involved in this sector has moved on in leaps and bounds within the space of a generation, and rightly so. The message now is, “Be great at what you’re doing.” That does not necessarily mean being an excellent employee. It could mean being brilliant in a charity, brilliant at community work, or brilliant in a sport. There are so many different aspects. Success should be what a person thinks it is internally, and not what society thinks.

When I was growing up, I was very much steered towards certain careers. Admittedly, politics was not actually one of them, so in some eyes I may have failed in my life. I assure Members that I really enjoy being in this place; having spoken to colleagues across the House, I know that we all feel truly honoured to be here. I look forward to the day when, whatever disability our colleagues may have, no one bats an eyelid. There is nothing stopping that from happening. I look at some of our colleagues in this place. For example, my right hon. Friend Robert Halfon, who is a very good friend, has not been held back by his disability.

Our role as parliamentarians is to say loudly and clearly that people’s perceived disability is not really a disability. We face so many challenges in life. Hopefully, when statesmen or community leaders say enough times, “Actually, you have very few barriers,” people will begin to believe it. I look forward to providing support in whatever small way I can.

I will wrap up now, because I know others wish to contribute to debate on this Bill. In conclusion, this Bill not only helps people with Down syndrome, but, as my right hon. Friend the Member for North Somerset has already said, sets out a framework for how we can provide services in the future for those with a range of disabilities and special needs. This is the first in what I hope will be a series of legislative measures that we can all get behind.

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud 1:06 pm, 4th February 2022

It is a pleasure to speak in this debate. I congratulate my right hon. Friend Dr Fox on all of the work that he has done. I see that team Freddie and a number of friends are in the Public Gallery providing their support.

This Bill means a lot to thousands and thousands of campaigners. There are 47,000 people with Down syndrome and their families around the country. I give particular credit to the families from Stroud and Gloucestershire who have reached out to me to express their delight that this Bill has been introduced and also to explain their experiences and why it is so important. This is actually a spectacular use of a private Member’s Bill. I am also thrilled that the Minister for Care and Mental Health, my hon. Friend Gillian Keegan, is at the Dispatch Box. We have discussed Down syndrome for many, many years, because we are both blessed with nephews with Down syndrome. Those boys give us great joy, particularly as a distraction from this mad job.

The Bill proposes, for the first time, a duty on the Secretary of State to give guidance on housing, education, youth offending and national health authorities. It also imposes a similar duty on the relevant authorities, which is very important. The guidance will set out the steps required to meet the needs of people with Down syndrome, and I sincerely believe that it will be the start—and it is the start—of many other areas of policy and work to undo some of the problems that people with Down syndrome face in their daily lives.

My nephew, Rhys, is now 19 years old. He is the light of every room he enters. He works for the Thames Valley Cleaning company at the Select Car Leasing Stadium for the Reading Royals. He is right royally unimpressed with me—I am not cool, particularly when I am in a suit on the telly, so I hope he is not watching now. Let me relate part of Rhys’s story—[Interruption.] I am sorry if I get upset. It is not just because I am pregnant; I once tried to talk about Rhys in Camden Council many years ago and cried then as well—

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

Let me give my colleague a brief respite. I know that she is a massive fan of the Bill of my right hon. Friend Dr Fox and I look to hearing further words from her.

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

I am blessed by having great colleagues in this Chamber.

Alice fell pregnant aged 15. As she was so young—we had no Down syndrome in our family and there is a common belief that only older, geriatric mothers as they are often referred to in maternity terms have Down syndrome children—Alice was not offered any advice. She did not have any discussions about Down syndrome. She was 15 and scared. Her family was not around her, we did not know about the pregnancy in the early stages, and I doubt that she asked any questions. It was 20 years ago, too, so there were few smartphones and limited ability to google.

When Rhys was born, Alice was immediately in love with her baby son, but a few days later, my nurse mum spotted signs of Down syndrome. Notwithstanding the absolute love that she felt for her child, it is fair to say that my sister was pretty shocked by what was happening. Remembering that she was still a child herself and all the hopes and dreams that go into a pregnancy, I have since spoken to other parents of Down syndrome children and parents of other children with disabilities—

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

On that point, does my hon. Friend agree that we need a real focus not just on the person with Down syndrome but on the bubble around them—carers, friends and family—because they are involved in the potential ups and downs of the journey as much as the person with Down syndrome themselves?

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

I completely agree. I have spoken to other parents who have discovered upon their child’s birth that they have a child with a disability about their fear, and about the loss of their hopes and dreams; their belief that they would take the child to university, or to get married, is dashed. With Down syndrome in particular, people believed that the child would die aged about 30. There is such a lack of education. That was particularly the case when Rhys was born, but I think it is still true now. Thinking about the bubble—the whole family—is incredibly important, and that is hopefully what the Bill will do. So much of what we think we know when it comes to disabilities is often not true.

Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe

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?

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

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.

Photo of Jonathan Gullis Jonathan Gullis Conservative, Stoke-on-Trent North

Let me quickly add my support for the Bill introduced by my right hon. Friend Dr Fox. On the point that my hon. Friend Siobhan Baillie made about education, we need education not just for expectant parents or young people but for employers too. One of the things that shocks me most is that there are plenty of people who have Down syndrome who could, if they wanted, be in our workforce playing a fulfilling role. We know that the benefits of work include increased life expectancy, as well as better physical and mental health. Warwickshire County Council had a great scheme supporting employers to understand how to support not just people with Down syndrome but those with other learning disabilities, and how to make them an important part of their workforce. That encouraged a lot more people to enter the world of work. Does my hon. Friend agree that those are the sorts of things that we need to see happening, so that employers understand the full potential of everyone across our United Kingdom?

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

I completely agree. Rhys earns £9 an hour—he is far richer than me, because he has no outgoings—but he enjoys his job and he feels fulfilled by it. Schools such as The Shrubberies in my patch do an awful lot of work to make sure that people go on to be work-ready, as do our colleges, such as SGS Stroud. Again, that is why the focus that the Bill will bring for the Government, local authorities, schools—everybody—is so important. We are thinking slightly differently, and I really welcome that.

I should be honest and say that I did not handle my sister’s being pregnant very well. I was still a teenager myself. I genuinely thought that, as a teenage mum, her life was completely over and she would not get to enjoy a lot of the things that I had enjoyed, but I could not have been more wrong. She definitely had a very different life from me in many respects, but I deeply regret my lack of understanding and some of the anger I felt on her behalf. It was unjustified and it was wrong, because Rhys was the best thing that happened to all of us in our family for so many reasons. But, boy, our learning curve has been so steep. I have seen my little sister battle for the understanding of people with Down syndrome.

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

One thing I wanted to mention was to ensure that we realise that this affected all communities up and down the country. It is not specific to a particular geographical area or heritage. Does my hon. Friend agree that the Bill will be beneficial to all communities?

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

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.

Photo of Edward Timpson Edward Timpson Conservative, Eddisbury

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?

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

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 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.

Photo of Ruth Edwards Ruth Edwards Conservative, Rushcliffe

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.

Photo of Siobhan Baillie Siobhan Baillie Conservative, Stroud

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.

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central 1:23 pm, 4th February 2022

We have had some amazing contributions today. First, I obviously thank my right hon. Friend 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.

Photo of Gagan Mohindra Gagan Mohindra Conservative, South West Hertfordshire

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.

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Liam Fox Liam Fox Conservative, North Somerset

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.

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Brendan Clarke-Smith Brendan Clarke-Smith Conservative, Bassetlaw

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?

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Edward Timpson Edward Timpson Conservative, Eddisbury

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?

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Jonathan Gullis Jonathan Gullis Conservative, Stoke-on-Trent North

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 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?

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

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.

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

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?

Photo of Jo Gideon Jo Gideon Conservative, Stoke-on-Trent Central

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.

Photo of Stuart Anderson Stuart Anderson Conservative, Wolverhampton South West 1:36 pm, 4th February 2022

I thank my right hon. Friend Dr Fox not just for bringing forward the Bill but for his work behind the scenes. All too often, we see the work that goes into a speech of three, four or five minutes in the Chamber, but my intake in particular could learn a lot from him and his experience in getting cross-party support for the Bill and having a reasoned debate on such a valuable topic.

It is delightful to see cross-party support in the House for levelling up outcomes for people with disabilities, including those with Down syndrome. As the Member of Parliament for Wolverhampton South West, I am committed to championing health and wellbeing for my constituents. We always see that as doing things such as eating your five a day or making sure that you have a walk, exercise or do different park runs. I took it to the extreme last year—my hon. Friends would not forgive me if I did not mention this—when I ran the world’s toughest mountain race in six days in Wales for two good causes: the Wolves Foundation for communities across all areas of Wolverhampton; and the campaign to prevent veterans’ suicides, which is a subject close to my heart. I ran that with a paralysed foot.

I have previously talked about when I was shot and how I went on to have a military career. I had a physical disability and was told that it would never be possible to do that. At the time, I did not think I would do it, but I did. However, in Wolverhampton and across the country, many groups, communities and people with Down syndrome face unique challenges every day of their lives and they need careful planning.

Photo of Craig Williams Craig Williams Conservative, Montgomeryshire

Before my hon. Friend runs away from the point that I wanted to make, he ran through the most glorious constituency of Montgomeryshire but, as I said earlier to my right hon. Friend Dr Fox, the Bill sadly does not apply to the great constituencies that he ran through. Will he join me in imploring the devolved Administrations to look to my right hon. Friend as inspiration and introduce similar legislation?

Photo of Stuart Anderson Stuart Anderson Conservative, Wolverhampton South West

I thank my hon. Friend for his intervention. I believe that I ran through his constituency on day 3. In Machynlleth, we encountered our first shops and we were able to get some lollies as we passed through; it is a beautiful area. Yes, that should be considered across the devolved Administrations as well. I would welcome that.

We need to think about the careful planning that allows people to continue to live a normal life, day in, day out. It is not straightforward or easy. A lot of consideration has to be brought in. It is right that the provision is planned according to the individual’s needs. I am glad that a commitment has been made to consult widely on proposed guidance as the Bill is taken forward, ensuring that the voices of those with Down syndrome and their families and carers are heard, and that the guidance is fit for purpose.

Photo of Jonathan Gullis Jonathan Gullis Conservative, Stoke-on-Trent North

Education investment areas were announced in the “Levelling Up” White Paper. I suggest that the Bill, brought forward by my right hon. Friend the Member for North Somerset, has influenced Government policy in a wider spectrum. Education investment areas will see up to £30 million funding over the next three years for councils to offer up to 10,000 additional respite placements for children and young people with special educational needs, including young people who have Down syndrome. For local authorities seeking the money—the great city of Stoke-on-Trent is lucky enough to be one of the 55 announced to have secured an education investment area—this is a really good way to help with that education and with understanding the needs of parents and care givers.

Photo of Stuart Anderson Stuart Anderson Conservative, Wolverhampton South West

My hon. Friend raises a valid point. It is about understanding those needs. I am delighted that investment has been rolled out across the country in many areas that vitally need it. That is welcome. He mentions local authorities. I have a question of this Bill. I have worked closely with others on the armed forces covenant, being an armed forces champion prior to coming to the House and having sat on the Select Committee on the Armed Forces Bill. The covenant has due regard, as does the Bill, to health, housing and education. It would be good for the Minister to expand on how the Bill will link with those areas.

Alongside the Bill, I welcome the steps taken by the Government to consider ways to improve outcomes for children and young people through the SEND review. I am delighted that the Government have confirmed an extra £1 billion to help local authorities, schools and other providers to deliver better support for learners with complex needs. At this stage, it would be remiss of me not to mention the hard work that all education providers across the country have delivered, but particularly the SEND schools. My constituency has Penn Hall, Tettenhall Wood, Penn Fields special school, Broadmeadow and Wightwick Hall. I visited all but one during the lockdown and covid period, when we could, to work with them in what was the most complex and challenging time for anyone. They did outstandingly, and how they delivered that is a credit to the children, the parents, the teachers and the cultures in those schools. Funding for these schools has increased by 13% on last year, meaning high-needs funding stands at £9.1 billion in 2022-23. This will benefit learners from early ages up to the age of 25, as well as those in alternative provision due to exclusion, illness or other reasons.

Another issue that needs to be looked at is guidance on potential barriers to work. Fewer than two in 10 people with learning disabilities are in employment. My constituency has the highest youth unemployment in the country. I recently held a jobs fair in the constituency with more than 50 different providers and several hundred people looking for work. Every single one of those providers had a job vacancy, and we were putting people together. Wolverhampton has the lowest youth employment, and with two in 10 people with learning disabilities currently out of employment, that will significantly impact communities in Wolverhampton. We need to look at that.

Despite falling in most areas across the west midlands, the disability employment gap remains too high. We have to work on this across the country, because levelling up is for all areas. Everyone should have an equal opportunity to work, so I am pleased that the Government are committed to seeing 1 million more disabled people in work by 2027. That is exceptional, but I think we should do more to push it. They have made good progress already, but as I said, we can always do more. I welcome the Government’s commitment to double down on that work, particularly the £339 million of funding in each of the next three years, which will continue to establish disability employment schemes such as the work and health programme and access to work scheme, through which many disabled people can benefit from grants worth just over £62,000. That goes to covering the costs of specialist equipment to help them to do their job. There are many complex needs that we have to factor in and work with.

To return to Wolverhampton, I am delighted that a pilot scheme is running at the University of Wolverhampton, which is at the heart of our community and is spread across our city centre and many surrounding areas. It offers a passport to students who already receive extra support to capture information about the adjustments that they benefit from to avoid repetition and disclosures when they start work. Thousands more could benefit if the scheme was rolled out across the country.

As the work gets under way, I ask the Minister to ensure that disabled people, including those with Down syndrome, are front and centre of levelling up. This week, we heard the levelling up announcement, and Wolverhampton certainly did well through the towns fund, the future high streets fund and the levelling up priorities. We also have the National Brownfield Institute. If it is not working in communities, however, it is not working. We have to ensure that levelling up truly works for everyone, and the Bill is a great way to achieve that.

Photo of Lia Nici Lia Nici Conservative, Great Grimsby 1:46 pm, 4th February 2022

I congratulate my right hon. Friend Dr Fox. As a newbie and a Back Bencher I still cannot quite believe that I am in the same place as him. This is a truly landmark Bill, and it has been fantastic to learn from him how such a Bill can be formed to make a real difference in human beings’ lives.

I am chair of the apprenticeship diversity champions network, and one of our aims is to get more people with learning difficulties and disabilities into apprenticeships and long-term work. The Bill will help to get employers to understand that people with Down syndrome are very able to work in their workplaces. After this debate, in National Apprenticeship Week next week, I will write to the top 100 apprenticeship providers to say that they need to think about employing more people who have Down syndrome and who have learning difficulties and disabilities more widely.

I do hate the term “disabilities”. It should be “differences” or “diversities”, because everybody can do some things and not others. I have felt for a long time that the word “disability” does a disservice to our fellow human beings. I feel blessed that, as I was growing up, my mother retrained as a social worker. She went to university, while she was working full time as a catering manager, to become an assistant social worker and went on to become a fully qualified one.

My mother specialised in learning difficulties and disabilities, so in my teenage years I had lots of discussions with her and learned about the different types of disabilities. She was and still is passionate about people with difficulties and disabilities having as full and independent lives as possible, which I have taken to heart and always thought about. We all want to be independent and to have fruitful and enjoyable lives, including work lives. If employers are watching or listening to this, or reading about it afterwards, they should start to think about taking on people who have Down syndrome, because they can add a fantastic extra dimension.

Photo of Jonathan Gullis Jonathan Gullis Conservative, Stoke-on-Trent North

My hon. Friend is a doughty champion not just for Great Grimsby but for skills and apprenticeships across our country. She worked in the further education sector before entering this place, which goes to show the breadth of talent and life experience that we now have on both sides of the Chamber. Does she agree that that makes this a much more representative, diverse and better House of Commons?

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

I thank my hon. Friend for his support and for his passion about education. We have many conversations about it, although I was worried at one point that he was going to say that I was teaching in further education before he was born, which, worryingly, might actually be true. We will brush over that.

I urge employers to think about taking on people who have Down syndrome. As the Bill is so specifically about Down syndrome, it will allow the message to be communicated much more widely to employers.

There is another reason I feel that this is a landmark Bill. Let me use a metaphor. One of my first jobs when I was 18 was as a barmaid in a country pub not far from Grimsby called the King’s Head, in a little village called Keelby. In the 1980s, pubs were part of their communities. They still are now, although perhaps not as much, sadly. One resident of the village—I will not use his proper name, as I have not asked his family’s permission, but we will call him Bob—lived across the road from the pub. He came into the pub every night and was welcomed by everybody. He had his own special tankard hanging up. When Bob came in there was a particular orange juice that he liked to drink at a particular strength—I had to learn how he liked his drink—and he had a pint with everybody. How England is embracing people with Down syndrome with the Bill is very much like how Bob was embraced in the pub. He was greeted as an equal, and joined in conversations and played pub games. It was very much part of his life. He was working at the time. Is it not lovely to think about how the country and, we hope, the wider United Kingdom can embrace the Bill?

As my right hon. Friend the Member for North Somerset says, it is important to have a named person in the ICS and care sectors.

Photo of Brendan Clarke-Smith Brendan Clarke-Smith Conservative, Bassetlaw

I endorse my hon. Friend’s comments about disabilities, and particularly that we all have different needs and should be looking to embrace that. I found out when I was 18 that I was dyspraxic, and it helped explain a lot of things for me. I still have a bit of a challenge with my positioning in the Chamber sometimes.

The way that we view special educational needs and other needs has changed a lot in this country over the years. Does my hon. Friend agree that the Bill is a great opportunity to showcase the talents and contributions of people with Down syndrome in this country, and that we can take that attitude forward so that the United Kingdom is a world leader in this regard?

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

My hon. Friend is absolutely right. The Bill will help to take away some people’s fear. As I said at the beginning of my speech, I feel blessed because I have been able to learn about people with learning disabilities and people with Down syndrome since I was a young teenager, and I have also worked with people with learning difficulties and disabilities. Realising that they have the same or similar goals to everyone else—to find somewhere nice to live, to be independent, to find somebody they love and to have a good job—is the crux of all this. I hope that the specific mention of Down syndrome will take away the fear about what it means to have it, and that we will be able to have an open conversation in the village pub that is England and the wider pubs of the UK. That will mean that we can start to talk about it and not be scared of it. A lot of people are scared. They do not understand and they might not have ever met anybody who has Down syndrome. We in this place, with the fantastic guidance of my eminent right hon. Friend the Member for North Somerset, will enable that to happen.

Photo of Feryal Clark Feryal Clark Shadow Minister (Health and Social Care) 1:54 pm, 4th February 2022

I pay tribute to Dr Fox for introducing this important Bill. I also pay tribute to all the hon. Members who have contributed today and thank them for the wonderful personal accounts that we have heard, especially from Siobhan Baillie, who told us about her sister and nephew.

As we have heard, there are about 47,000 individuals in the UK with Down syndrome. We know that they are at increased risk of some medical conditions, more susceptible to infections, and more prone to hearing and visual impairments. It is recommended that those individuals should have extra health checks in early life and regular health reviews thereafter. They may also need ongoing support for different aspects of life both in childhood and as adults. People with Down syndrome and their families are often reported as struggling to access services such as speech and language therapy, additional support in school and appropriate levels of social care. I very much welcome the measures in the Bill that seek to address those challenges.

I also support the Bill for personal reasons. At the same time I became a mother about eight months ago, some friends of mine, Sevcan and Richard, had a baby boy called Asher. He is a bundle of joy and he also has Down syndrome. In the very short time that Asher has been in this world, he has had many challenges and many operations. I see Asher’s family already struggling and having to fight for him, and I see them getting ready to continue that fight, like the families mentioned by so many hon. Members today.

The experience of Asher’s parents has given me an insight into the challenges faced by families with Down syndrome children, and it was that insight that encouraged me to stand for election as the vice-chair of the all-party group for Down syndrome. As vice-chair, I know the impact that properly informed and resourced services can have on those living with Down syndrome. Too often they are forced into provision or services that are just not suitable for their needs. That means they are unable to access the support they need, whether that be education, healthcare or housing.

Being unable to access those services properly means the life experiences and the quality of life of people with Down syndrome can be seriously affected. By ensuring that the relevant authorities—the NHS, schools or local authorities—have the correct guidance, we will have a very real impact on the experience of those living with Down syndrome. It is incumbent on all of us as policy makers to ensure that people in this country, regardless of who they are, can live as full lives as possible. I am pleased that the Bill is taking the steps to better enable people with Down syndrome to do so. For that reason, I am pleased to support the Bill today and I look forward to it progressing in the other place.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care) 1:59 pm, 4th February 2022

I start by congratulating my right hon. Friend Dr Fox. It has been a pleasure to work with him, the Bill Committee and all the other teams. He has done outstanding work in introducing the Bill and navigating it through its Commons stages. I personally have learned a lot from him.

This is truly a groundbreaking Bill that will make a real difference to the lives of people with Down syndrome across the country. It highlights the hugely important role of private Members’ Bills and what can be achieved when MPs from across all parties work together. I extend my personal thanks to the Bill’s sponsors, all Members who have been instrumental in getting us this far and everybody who has spoken today and brought to life why this matters. It has been wonderful to hear the stories of Mark, Rhys and his mum Alice, the Shakin’ Stevens fan and Asher and the beginning of his journey. Hopefully this Bill will help Asher’s parents to avoid some of the struggles that other families have been through. It is so positive to see such unanimous support for this Bill, which has been a joy throughout its passage.

I thank all the members of the all-party parliamentary group on Down syndrome, of which the hon. Members for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) and for Enfield North (Feryal Clark) are the chair and vice-chair. They have campaigned for equal access and service provision for people with Down syndrome, and they have supported the Bill’s passage.

I especially thank the people with Down syndrome, many of whom are in the Public Gallery with their families, and the representative organisations that have campaigned tirelessly on improved support for the 47,000 people across the UK with Down syndrome. I also thank my constituents who have written to me and the many families I have met at the Apuldram centre and at Aldingbourne in my Chichester constituency. It has been great to share their journeys and hear their stories.

I feel really fortunate to be the responsible Minister when this Bill is before Parliament. I support the Bill wholeheartedly. It will be instrumental in improving the lives of people with Down syndrome by tackling inequalities in access to services. It is not right that such disparities exist, and I have seen at first hand in my own family the challenges that people with Down syndrome can face in accessing the support they need.

On Second Reading and in Committee, I spoke about my family’s experience. Although my nephew Joseph Gibson is thriving, and his school, St John’s School in Chigwell, is helping him to thrive, there is no doubt that there have been challenges along the way. I have watched my sister-in-law, Sara Gibson—I know she is watching me now—and my brother Marcus Gibson battle for the support that Joseph needs.

I want everyone to get the right support at the right time and in a way that works for them. That is why this Bill, for the first time, will require the Government to publish guidance on how authorities should meet the specific needs of people with Down syndrome.

Photo of David Duguid David Duguid Conservative, Banff and Buchan

I congratulate my right hon. Friend Dr Fox on introducing this Bill, which has huge support across the House. Does the Minister agree that, when the Bill passes, it will be an example for the communities that suffer from other genetic and chromosomal disorders and learning disabilities? They might not be as common or as well known as Down syndrome, but they are no less impactful on those families.

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care)

My hon. Friend makes a very good point, which has been raised by my hon. Friend Suzanne Webb and my right hon. Friend Sir Robert Goodwill, who have previously mentioned specific genetic conditions. We will definitely consider overlaps and linkages between these conditions and Down syndrome through the consultation on the development of the guidance. Even though, as has been stressed many times, this Bill is specifically drafted to increase its chances of being passed, many groups will benefit from the work to develop this guidance.

I also thank my right hon. Friend the Member for North Somerset for the two amendments he tabled in Committee to ensure that the guidance is laid before Parliament on publication and to amend the Bill’s long title. I was pleased to accept both amendments on behalf of the Government. Laying the guidance in Parliament, as my very experienced right hon. Friend explained, will ensure it has the proper scrutiny.

I also thank my right hon. Friend, other hon. Members and stakeholders for providing invaluable feedback, on Second Reading and in Committee, on ensuring the implementation of the guidance in practice. Of course, the guidance must be acted upon for us to see real change for people with Down syndrome. That is why we have committed to having a named lead on integrated care boards who will be responsible for the implementation of the guidance in practice. The named lead will ensure that the right services are in place at local level and that people with Down syndrome are able to access those services. That will be a much-needed voice. We are determined that the guidance will be implemented fully and as intended at local level. This will lead to tangible improvements in the lives of people with Down syndrome, and I am personally very committed to that.

At the heart of the Bill is guidance for the relevant authorities—local authorities, and education and health authorities. I am clear that to ensure that the guidance is fit for purpose, we will consult widely and in an open and inclusive way. We will seek views from people with Down syndrome and their families, from the voluntary sector and from others who support people with Down syndrome to ensure that it reflects their needs and experience. We will work with stakeholders to ensure that the guidance remains fit for purpose. This is a real opportunity, and we do not intend to miss any aspect of it.

Once the guidance is published, the Government will keep it under regular review and update it periodically. As I said, we also recognise that people with genetic or chromosomal conditions other than Down syndrome may experience similar problems to people with Down syndrome, so we will definitely look at that and consider how the guidance can help some of those groups more broadly during the process.

I know from the debates during the passage of the Bill that employment is a really important consideration, on which we have not done well enough to date. We will continue to explore any steps required to make sure that people with Down syndrome who want to work can find work that is right for them. Fundamentally, we must make sure that people with Down syndrome maintain good health and receive the right education to support their transition into work. The Bill is an important and meaningful way of achieving that aim. It will provide those lasting foundations for people with Down syndrome to be successful.

Additionally, we are delivering a wide range of employment initiatives, such as dedicated disability employment advisers at our Jobcentre Plus sites. All these schemes, including the Access to Work fund and so on, will help to ensure that people with a learning disability have better opportunities in the workplace. Again, that is something that I am personally committed to.

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

I thank my hon. Friend for the plans that are being put in place, but are there plans to ensure that people who work in the Department for Work and Pensions have the relevant training to understand the specific needs of people with Down syndrome and to help get them into work?

Photo of Gillian Keegan Gillian Keegan Minister of State (Department of Health and Social Care)

I regularly meet the Minister for Disabled People and the Minister for Employment—the three of us are often together—to talk about how we can optimise opportunities for many people across our society, but particularly those with learning disabilities. The numbers are not good enough, and we know that we have more work to do. As I said in Committee, I will return to the issue of employment in developing the Down syndrome statutory guidance. We know that good work helps people to live happier, healthier and more independent lives.

On scope, as healthcare, education and housing are devolved matters, the Bill and guidance will cover England only. However, I know that there is real commitment to improving outcomes for people with Down syndrome across the whole of the United Kingdom, and I look forward to working with my counterparts in the devolved Administrations as we develop the guidance so that we can ensure that there is consistency of approach and inclusion for people with Down syndrome across the whole of the UK.

It has been a pleasure to work with my right hon. Friend the Member for North Somerset in supporting the Bill on behalf of everybody with Down syndrome and their families, including my own. Its passage so far represents the very best of the parliamentary process, with MPs working together cross-party for a common purpose. I very much look forward to the Bill’s successful passage through the Lords, which Lord Kamall will oversee. He will have heard the pleas from many Members about timing, to try to coincide with World Down Syndrome Day on 21 March. I commend the Bill to the House.

Photo of Liam Fox Liam Fox Conservative, North Somerset 2:08 pm, 4th February 2022

With the leave of the House, may I say what an absolute joy it has been to find this bolthole of consensus in the psychodrama that seems to be British contemporary politics? I thank colleagues for their very kind words today; to get to this level of flattery in the House of Commons, one normally needs to be dead. [Laughter.]

I remind colleagues of the point made by my hon. Friend Selaine Saxby that this Bill is not about a medical condition, Down syndrome, but about people with Down syndrome, who have a right to dignity and individuality and to make the choices for their own lives that we all take for granted.

I want to thank the many people who have made today possible. I thank the National Down Syndrome Policy Group, and all the other voices in the Down syndrome community, including the carers and families whose input has been invaluable. I thank the officials at the Department of Health and Social Care, who have done outstanding work behind the scenes to bring us to the point that we have reached today. I especially thank the Minister. We have been so lucky to have a Minister in the shape of my hon. Friend Gillian Keegan. Not only is she an outstanding Minister in her own right, but her family background and understanding of the issue have been crucial in helping to provide the necessary momentum within Government. Indeed, I thank the Government as a whole, and in particular the Secretaries of State who signed off the two very important amendments. I am sure that they entirely understood the precedents they were setting, and it was therefore—as they would say in “Yes, Minister”—all the braver of them to do so.

I thank my own staff in the House of Commons, and I thank my constituency assistant Annabel Tall, who began much of this process when she brought her son Freddie to see me at my constituency surgery, shedding light—many colleagues will have had this experience—on the difficulties that parents can have in fighting fire on so many fronts on behalf of those whom they love. I hope that means that in some sense we have gone full circle today.

I thank all colleagues for their support, for their contributions, for the encouragement that they have given, and for their advocacy of this whole process in the House of Commons, in the constituency and in the media. It has been a real example of what we can achieve together—and that includes the all-party parliamentary group on Down syndrome, which provided so much support.

None of us are passengers in our own lives or in the society in which we live, and change is always within our grasp if we choose to seize it, especially those of us who are in the uniquely privileged position of being able to make the laws in our own country. I thank all those who have chosen that path today. The real heroes of this debate, however, are not those in the Chamber or those who make the laws pertaining to Down syndrome, but all those who have fought, struggled, and overcome the challenges that they have faced without our help for far too long.

Question put and agreed to.

Bill accordingly read the Third time and passed.