Down Syndrome Bill

– in the House of Commons on 26th November 2021.

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Second Reading

Photo of Liam Fox Liam Fox Conservative, North Somerset 9:34 am, 26th November 2021

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

Before I turn to the purpose and contents of this Bill, let me begin with some thanks. First, I thank those who helped us out at our photoshoot the other day: Fionn, Max and Freddie. I am sure that all those Members who were there would like to add their appreciation. We are very sorry that it took so long, but we are very grateful to them for their patience and their fortitude. I also thank the 107 MPs who turned up to offer their support on that occasion. I thank the role models for those with Down’s syndrome, particularly Tommy Jessop and Bethany Asher, who have blazed a trail for others to follow.

I thank the co-sponsors of the Bill, my hon. Friend Mark Logan, Darren Jones, my hon. Friends the Members for Bury North (James Daly) and for Carshalton and Wallington (Elliot Colburn), Ben Lake, my hon. Friend Nick Fletcher, Dr Cameron, my hon. Friend Mrs Drummond and the hon. Members for North Antrim (Ian Paisley) and for Oxford West and Abingdon (Layla Moran). It is quite a roll of honour.

I also thank the organisations that have supported us, in particular Edel Harris, the chief executive of Mencap, Ken and Rachael Ross of the National Down Syndrome Policy Group and Portsmouth Down Syndrome Association, Sue Dennis and Joanna Thorn of Up and Downs Southwest and others including Positive About Down Syndrome, PSDS and Annabel Tall, my constituency assistant, whose son Freddie, who has Down’s syndrome, was the reason we first met when she came to one of my constituency surgeries.

Finally, I thank those who have helped us get the Bill to this point, especially the Minister for Care and Mental Health, my hon. Friend Gillian Keegan, who has gone out of her way in the most exemplary fashion to help us get the Bill to the shape it is in today. I also thank David Nuttall, one of the civil servants in the Department of Health and Social Care, who has been instrumental in putting the Bill together. Civil servants do not always get fulsome praise on the Floor of the House, but let me say on this occasion that it is more than deserved. Finally, I thank David Goss in my own office, whose tireless efforts have helped Members of Parliament and those involved play a full part in where we have got to today. If I have missed anyone else, it is my memory, not my lack of appreciation that is at fault.

The first question that people have tended to ask about this private Member’s Bill is, “Why? Why this issue, and why now?” Let me answer that in three ways. First, there is the challenge faced by those who have Down’s syndrome. When a child is born with an extra copy of their 21st chromosome, they enter a different path in life from the rest of the population. Inevitably, their families, too, will face different challenges. They will come in the form of medical problems, educational needs and long-term care challenges.

Let me start with the medical challenges. The medical problems associated with Down’s syndrome can manifest in many ways. Congenital heart defects are often first. Approximately half of all infants born with Down’s syndrome have a heart defect. Down’s syndrome is a major cause of congenital heart disease and the most frequent known cause of atrioventricular septal defects. There is also likely to be: higher incidence of hearing loss and poor vision, with increased incidence of cataracts; orthopaedic problems, including hip dislocations; and, more seriously, leukaemia. Children with Down’s syndrome are at an increased risk of developing any type of acute leukaemia. In particular, they are 150 times more likely to develop acute myeloid leukaemia and around 30 times more likely to develop acute lymphoblastic leukaemia. There is also increased incidence of hyperthyroidism, low thyroid function, obesity and Alzheimer’s disease in later life. People with Down’s syndrome are also more prone to infection and may struggle with the respiratory infections, urinary tract infections and skin infections that the rest of the population will deal with relatively easily.

Next, we come to intellectual development issues, one area where public perception tends to be inaccurate. Although it is true that people with Down’s syndrome usually have some degree of developmental disability, it is often mild to moderate, which means that for many a fulfilled life with meaningful employment and social integration is possible. Lumping every child with Down’s syndrome into the category of “severe learning difficulty” is to fail to understand the reality and complexity of the situation.

Photo of Robert Buckland Robert Buckland Conservative, South Swindon

My right hon. Friend has come to a very important part in his speech, because there is a real concern among people with Down’s syndrome and their families that the system or other people ascribe a value to their lives that they have no business in doing. The value of the lives of people with Down’ syndrome is immense, and what we should be doing is making sure that they can access mainstream services just like the rest of us, rather than ascribing some sort of lower value to the quality of their lives.

Photo of Liam Fox Liam Fox Conservative, North Somerset

I am grateful to my right hon. and learned Friend, because he makes an important point that I will return to later about the need for dignity and independence, and to stress that there are no second-class citizens when it comes to Down’s syndrome.

Photo of Mark Pawsey Mark Pawsey Conservative, Rugby

I congratulate my right hon. Friend on introducing this Bill and securing Government support for it. He gave a roll call of organisations that support people with Down’s syndrome, many of which are local. I wish to give credit to the great work of New Directions in my constituency and the support it provides to people with Down’s.

Photo of Liam Fox Liam Fox Conservative, North Somerset

I am grateful to my hon. Friend, who is correct in what he says. I am sure that Members who speak in this debate will wish to highlight charities and other groups in their constituencies that play a major supportive role and without which parents would find it much more difficult, as would people with Down’s syndrome, if that help were not there. We could all spend pretty much all day going through a range of different groups, and I reiterate that if I have omitted any in my introduction, I apologise for doing so.

The second reason for bringing this Bill forward is that we are dealing with a defined population—about 47,000 in the United Kingdom—who have a clear diagnosis. Trisomy 21 will not be confused with any other condition. At this point, it is worth my saying a word about mosaic Down’s syndrome, which affects about 2% of those with Down’s syndrome. For children with mosaic Down’s syndrome, some of their cells have three copies of chromosome 21 but other cells have the typical two copies. For the purposes of this Bill, it is my intent that this group should have the same application of provisions as others.

I come to this issue from many different angles—personal, medical and political. When I was growing up, the boy next door to me, Drew Houston, had Down’s syndrome. What is interesting is how as a child it is so much easier to accept difference and to accept people for what they are, rather than putting categories on to them—would that that would continue through all our lives. As a GP, I, naturally, dealt with individuals and families who had the range of medical conditions that I mentioned earlier. As Members of Parliament, we can all recognise why there is such widespread support for this Bill throughout the House, because we have all had to deal with the complexity of issues involved here. We are talking not just about a learning difficulty, not just about a range of medical conditions or not just about social care here; we are talking about a plethora of issues that can affect families and it can be energy-sapping for parents and individuals alike to have to deal with those number of challenges simultaneously and for a very long time.

I have a slightly odd personal link to that, as I worked at the genetics laboratory at the DuPont Institute in Wilmington, Delaware, which is well known to the current American President—the institute, not me. Studies have indicated that single palmar creases, which used to be known as simian creases, are observed in 28% to 86% of people with Down’s syndrome—it is one of the things that doctors look at—but in only about 1.5% of the rest of the population. I am part of that 1.5% with a perfect single palmar crease, so I was one of those whose chromosomes were checked while I worked there.

I digress. The third reason why the Bill is timely and necessary is that of life expectancy. When I was born, the life expectancy of someone with Down’s syndrome was 13 years. By the time I became a junior doctor, it was 30 years. Today, it is 58 years and people with Down’s syndrome are now living into their 70s. That makes a huge difference, because they are the first generation who will outlive their parents, and that has been a major impetus for me to bring the Bill forward.

In medicine, we have made huge improvements in dealing with congenital heart disease; ear, nose and throat conditions; and leukaemia. When I took up my first medical job in haematology-oncology in the Glasgow Royal Infirmary in the early 1980s, we were in the early stages of developing the treatments for leukaemia that have brought us to the position that we are in today. Today, successful cardiac surgery allows many Down’s syndrome children with heart conditions to thrive as well as any other child with Down’s syndrome born with a normal heart.

Interestingly, the cure rates for some leukaemia patients with Down’s syndrome are exceptionally high compared with the general population. In general, the cure rate for childhood acute myeloid leukaemia is already very high at about 75%, but Down’s syndrome children with a specific sub-type of AML called acute megakaryocytic leukaemia have an overall survival rate of about 80% to 100% compared with only 35% in non-Down’s syndrome children. It is thought that the same genetic mutation that leads to leukaemia in those children also helps them to respond better to a certain type of chemotherapy.

It has been found, however, that the cure rate of acute lymphoblastic leukaemia is slightly lower in children with Down’s syndrome than that expected in the general population, at about 60% to 70% compared with 75% to 85%. That is perhaps due to the fact that, as I mentioned, children with Down’s syndrome are more prone to infections and more likely to suffer from toxic side effects of chemotherapy than other patients.

As I mentioned, perhaps the greatest impact of the much to be welcomed improvements in life expectancy and health outcomes is the additional pressure on parents. It is extremely difficult, if not impossible, for most of us to understand what it must be like to wake up every morning and ask, “What will happen when I am not here?” We have a chance to lighten that burden on the parents of children with Down’s syndrome.

Photo of Lia Nici Lia Nici Conservative, Great Grimsby

I wholeheartedly support my right hon. Friend’s Bill. On that point, does he agree that it is important to make sure that people with Down’s syndrome and other learning difficulties have the right to services when they are younger because it is vital to ensure that they are as independent as possible as adults, so that parents and carers feel that their children will have a good, long, healthy life?

Photo of Liam Fox Liam Fox Conservative, North Somerset

I completely agree with my hon. Friend, and I will come to the point about early intervention later because it is key, as in so many other things, to good outcomes.

The effects of this Bill should be a genuine example of what we talk a lot about these days, which is levelling up. In most parts of the country, our healthcare is good, reflected in improved health outcomes and life expectancy. When it comes to education, especially special needs, every Member of this House of Commons will be aware that it is patchy. We would do well to level up to the level of the best when it comes to special educational needs. However, when it comes to social care, the understanding of the implications of the increased life expectancy has not filtered through to every local authority that needs to make plans for long-term healthcare. I feel this is one of the most vital elements in bringing forward this legislation, because what would be completely unacceptable, a stain on our country and a scandal is to see those whose parents have died being, in future, placed in inappropriate institutions—in elderly care homes or, worse, mental health institutions. That is something that I think would bring shame to our country, as well as an utterly inappropriate lifestyle for those to whom we should be giving the best possible care.

Our improvements need to be mirrored across all our sectors. This Bill will result in the respective Secretaries of State giving instructions to local health authorities, clinical commissioning groups, local education authorities and local authorities in charge of long-term care to ensure that they make provision for, in the words of the Bill, “persons with Down syndrome”. Of course, it would be nonsensical for us to freeze the position in which we find ourselves today, which is why we require flexibility in the Bill. That is why it sets up an advisory committee, which will help the Secretary of State change those instructions as necessary and as conditions, the quality of our medical care and understanding improve over time.

There is one thing the Bill does not currently deal with, but it will when it comes back in Committee, and that is the issue of redress, for having increased rights is of no use if they cannot be enforced. Of course, the standard reply of what some people who no longer work in Downing Street prefer to call “the blob” is that the redress should be either a judicial review or to bring a civil case in the courts. To families fighting to get provision across medical services, educational services and social care, that is almost an insult.

We need to find ways of redress that are efficient, quick and cheap if we are to deliver on what I think everyone in this House believes to be the purpose of the Bill itself. I have discussed this extensively with the Government, and we were not quite able to bring in the provisions I wanted in the form that the Bill would require, but the Government, as I am sure the Minister will confirm later, intend to bring this forward as an amendment in Committee. It is far better that we get the right provisions in the Bill than that we go off half-cock now and have to amend them later. Let us get it right, not least so that those in the other place know that we have full agreement across the Bill in the House of Commons.

There are those who seem to imply that those with Down’s syndrome can just be grouped with various disability groups for whom legal provision already exists. I have to say that, in the last few days, I have become somewhat surprised at where some of these voices have come from. Let me be very clear—this goes to the point my hon. Friend made a few moments ago—and this is what Tommy Jessop’s mum told me this morning:

“People with DS are identifiable with identifiable characteristics but many are not getting the help they need. There are specific medical needs that need to be addressed. There are specific identifiable ways of helping them to learn. And there are identifiable strategies for helping them physically. Eg developing muscle tone or specific speech therapies”.

That was the very point about early intervention that my hon. Friend made in her intervention.

Our improvements in care have brought huge benefits, including increased life expectancy, but they also bring new challenges as those with Down’s syndrome increasingly outlive their parents. Without our actions, perfectly preventable human tragedies would occur, and if there is any point in our being in politics surely it is to ensure that such tragedies do not happen.

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

The right hon. Gentleman is making a powerful speech and I whole- heartedly support his Bill. As a paediatric physiotherapist in a former life I spent a lot of time working with brilliant groups, and my time with the self-help group for the Down’s syndrome children and their parents was among the best and happiest; it was really useful and hopefully the parents got the support they needed because it was all-encompassing and all-groundbreaking—social care, health, speech and language, audiology. Does the right hon. Gentleman agree this is the way we should go forward and that it is very important that these families get the support they need from the very beginning?

Photo of Liam Fox Liam Fox Conservative, North Somerset

The hon. Lady makes a powerful point: there must be a holistic approach because although the delivery of government exists in the silos of health and education and social care, the needs of patients do not. The complex, interactive needs of patients must be dealt with in exactly the holistic way she describes, and hopefully this Bill will ensure that that integration occurs to a greater degree in the future than, sadly, it did in the past.

The hon. Lady also makes the good point that today we are seeing an example of Parliament at its best: united across the traditional party divides to deal with an issue we have all experienced and where we all know things have to improve. I hope that while this Bill, to my regret, applies only to England, we will soon find ways to make its provisions available to all parts of the United Kingdom.

Photo of Liam Fox Liam Fox Conservative, North Somerset

Unsurprisingly, I shall give way to the hon. Gentleman.

Photo of Ian Paisley Jnr Ian Paisley Jnr Shadow DUP Spokesperson (Communities and Local Government), Shadow DUP Spokesperson (Culture, Media and Sport)

I congratulate the right hon. Gentleman on what he has said so far. It is unfortunate that legislative consent is not going to be considered in Scotland or Wales yet, and we hope we can encourage them to take that on and drive it forward. I hope the Northern Ireland Executive Minister of Health will adopt this and we will be champions together in this groundbreaking legislation.

Photo of Liam Fox Liam Fox Conservative, North Somerset

I am grateful to the hon. Gentleman for his point and perhaps I should explain why we did not bring this forward as a whole of the United Kingdom Bill. I did not want this to become an argument about the rights and wrongs or responsibilities of different parts of devolved Administrations in the United Kingdom; it has to be about people. If we can encourage other parts of the UK, through whatever systems of government are responsible for these issues, I hope the unity that exists across the House and the fact that this Bill was sponsored by all parties in the House of Commons will be a guiding light to those other parts of the United Kingdom about the urgency of making these rights available to all.

I end on the following point. This is not a Bill about a condition. It is not about dealing with Down’s syndrome; it is about people who deserve the same ability to demand the best health, education and care as the rest of our society. It is not on our part an act of charity; it is an act of empowerment and a recognition that all members of our society must have a right to respect, independence and dignity. That is why I have brought this Bill forward.

Photo of Liam Fox Liam Fox Conservative, North Somerset

No, as I am concluding.

For all the Drews, Freddies, Maxs, Fionns, Tommys and Bethanys it is not our voices that resonate in Parliament today, but theirs, and my message to them is, “You have been heard, at last.”

Photo of Douglas Chapman Douglas Chapman Shadow SNP Spokesperson (Small Business, Enterprise and Innovation) 9:59 am, 26th November 2021

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

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

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

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

Photo of Charles Walker Charles Walker Chair, Administration Committee, Chair, Administration Committee 10:02 am, 26th November 2021

Thank you, Mr Speaker, for making special provision for my guest today, who is up in the Public Gallery. Corina Gander and I met at 7.15 am in a very cold car park in Cuffley with our walking shoes. As you are aware, Mr Speaker, there are problems with transport today, so we arrived in Moorgate and then spent an hour in the rain getting here, but it is an important occasion and we both wanted to be here. Corina is the mother of Daisy. Daisy has Down’s syndrome, and she is going to be watching this with her mum later tonight on Parliament TV, as will Daisy’s four sisters and her proud grandparents.

I first met Corina nearly two years ago. She came to tell me, in no uncertain terms, that what was happening in Hertfordshire was not good enough; there was not enough support for her and her daughter. I did not know a huge amount about Down’s syndrome then—I know a lot more now—but I said to her, “So what are the problems?” My right hon. Friend Dr Fox brilliantly identified them in his introductory speech.

“Fundamentally,” Corina said, “the illness is just not taken seriously. When my daughter was born, she had terrible breathing difficulties. I kept saying to the doctors, ‘My daughter is struggling with her breathing,’ and they said, ‘Well what do you expect, Corina? She has Down’s syndrome.’” Then, one day, a health visitor came who had a relationship with the family, and she said to Corina, a worried mother, “What would you do, Corina, if this was one of your four other daughters?” Corina said to the health visitor, “I’d take her to A&E.” The health visitor said, “Well you know what to do, then, don’t you? I’ll hold the baby; you get your coat. We’re going to A&E.” That child, Daisy, was on life support for a month and then spent another three months in hospital. That is the stigma that my right hon. Friend is trying to address today.

Beyond stigma, my right hon. Friend identified other areas that need to be addressed—fragmented services, for example. At the moment, services are almost always fragmented. A young child will need physiotherapy, which will be in one place. Occupational therapy will be in another place. Speech and language will be elsewhere. Community paediatricians will be in another place. Then there are opticians, audiology and so on. It can be exhausting to navigate specialist services, but particularly so when one has a child who is very demanding of one’s time and other family commitments. We need to make it easier for parents to get the support that they need and, most importantly, their children need.

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

The hon. Gentleman is making a powerful speech in support of the Bill. He highlights a very important point about the need for integrated children’s services. At Serennu children’s centre in my constituency, all the services are under one roof, including the voluntary sector, and it is a comfortable place for families to go to. Children are not scared and families are not anxious. Does he agree that that is the best way forward?

Photo of Charles Walker Charles Walker Chair, Administration Committee, Chair, Administration Committee

The hon. Lady—I think we are all hon. Friends today—anticipates the next part of my speech and I will not detain the House for too long.

Members of Parliament love to take credit for all the wonderful things they do, but I take no credit for this at all. This is entirely down to Corina. She said, “Right, Charles, you seem like a motivated, engaged individual. Let’s convene a meeting of all the people who matter to me and my daughter.” So we did that and I actually came up with a few names that were not on the list.

Who did we have on the list? We had the wonderful Alison Patrick, who is a fellow traveller and parent. We had an amazing man called Dr Nick Cholidis, who is Daisy’s consultant, because consultants need to be absolutely at the centre of this. We had the wonderful—and I do say wonderful—county councillor, Teresa Heritage, who is the cabinet member for children, young people and families. When we were travelling up on the train, Corina and I did say that she was a diamond. It is not often that we identify county councillors as a diamond, but she is a diamond and I hope she is listening. It is a function of modern politics that everybody has very, very long titles, so I do apologise. We also had Dr Jane Halpin, joint CEO of Hertfordshire and West Essex Integrated Care Systems and clinical commissioning groups. I must also give a special mention to Sally Orr of the CCG and Andy Lawrence, Hertfordshire County Council’s lead for social care.

Now, why are all those names important? Because the point of my right hon. Friend’s Bill is to bring services together and integrate them.

Photo of Liam Fox Liam Fox Conservative, North Somerset

I am very grateful to my hon. Friend for giving way. Everything he says is absolutely correct. Does that not have an added importance in an era of greater life expectancy, when we can no longer depend on parents taking those with Down’s syndrome to services? Those services must be able to be independently provided to those who need them, without the need for parents to be a part of the equation.

Photo of Charles Walker Charles Walker Chair, Administration Committee, Chair, Administration Committee

My right hon. Friend is so right. As a constituency MP—we are all constituency MPs first and foremost—like him, I have met parents in their 70s and 80s who are distraught and worried, as they know their time on this earth is coming to an end and they are so concerned about the welfare of the children they love. I expect all of us have seen that or will see that during our time in Parliament, and thanks to my right hon. Friend we can now begin to alleviate that grinding worry that parents have.

We convened that wonderful meeting and something amazing happened: we got a Down’s syndrome therapy advice clinic in Hertfordshire Community NHS Trust. We now have an integrated therapies advice clinic in place in Hertfordshire. It is only a pilot, but it is being run in the community hospital in Welwyn Garden City. It is in the constituency of my right hon. Friend Grant Shapps, but I feel I can mention it because my constituents use it as well. I am so pleased that as a result of an intervention—as a result of parents wanting to get the very best for their children and engaging with a variety of service providers, as Ruth Jones mentioned—we are actually making progress.

The Minister, in her wonderful “Dear colleague” letter, made it clear that there will be a consultation process. My right hon. Friend the Member for North Somerset is looking forward to that process because he wants to get more from Government, and who would dare to resist him in those demands and requests put so charmingly? I will participate in that, Corina will and many, many people in Hertfordshire will want to take part.

But Members of Parliament are very good at knowing best, and Corina, on the way in, said, “Charles, I’ve written you a little note in case you can’t think of what you want to say”. I am going to read her note word for word. It is 220 pages—no, 220 words; my speech was 220 pages. It will take one minute and then I will firmly sit down back in my seat, on my backside.

Corina said:

“Can you imagine being born a little different, just a little. Imagine with that difference comes challenges. Everything takes time. You have to work so much harder to reach the milestones but you do reach them it all just takes a little longer and a lot of determination. Yet with the support of Health services and local authorities your life is easy because you receive all the help available to enable you to achieve. Now imagine you have Down syndrome and being told because you look a little different those services are not available to you.

Accept your difference and just get on with it. A facial feature should never determine the care and support someone receives.

We are all born equal and a disability should never deprive anyone to a great quality of life.

Every child with Down syndrome will grow into a successful adult we just need our health services and local authorities to help parents in guiding them there.

Not much to ask really.

I can guarantee you that you will never meet a more stronger determined person than that of someone with that extra chromosome, but no one should need to get the strength and determination from having to fight everyday of their life.

Those battles need to end, parents need to be parents and we all need to recognise that having Down syndrome is really just being a little different.”

I thank my right hon. Friend for what he is doing today. He is an inspiration to 47,000 people and all their parents, and all of us.

Photo of Ian Paisley Jnr Ian Paisley Jnr Shadow DUP Spokesperson (Communities and Local Government), Shadow DUP Spokesperson (Culture, Media and Sport) 10:12 am, 26th November 2021

Thank you for calling me in this debate, Mr Speaker. It was an absolute honour to be asked to be a joint sponsor of the Bill by Dr Fox, and I congratulate him on the way in which he has manoeuvred this piece of creative legislation through the minutiae of Government and civil service—not only to get it to the Floor of the House, but to do so with a fair wind from Government. The indications from Government are that they will support and endorse what is trying to be achieved.

It is amazing, when we read the terms of the Bill and think about what it tries to achieve, that this has not been done before. That is what is so groundbreaking about it. This was a clear and obvious gap that the right hon. Member, through the discoveries he made, realised needed to be plugged. The Bill will do that. It is also a fine example of where private Members’ Bills come into vital use. This House would be poorer if private Members’ Bills were not part of the democratic process in our nation. That is very important.

When we come into this House on a daily basis, we probably do not notice the architecture or the windows in the way that many people do. However, the huge window that we see as we walk into St Stephen’s Chapel and through the hallway there is the equality window, on which there are the scrolls of rights and equality legislation that this House has been engaged in over the centuries. This Bill is landmark legislation. It will stand with that equality and rights legislation. That is how important the Bill is to the House and to the nation. We are saying, “Yes, people with Down’s syndrome are different, but they are equal, and this makes them equal under the law—equally entitled to all the rights and liberties that our laws provide for every other citizen.” That is what is so crucial about today’s debate.

Two Down’s syndrome babies are born every week in Northern Ireland—there is a high prevalence there—but that is not something to be scoffed at; it is something to be celebrated. This is an instance in which we celebrate life and we cherish life, and the fulfilment that that life can give. The Bill will help to normalise that sense of celebration: if people are given everything to live for, they will lead fulfilled and proper lives.

We have seen some impressive and inspirational accounts of the Down’s syndrome experience in Northern Ireland and what parents have done. They share the view that that Down’s syndrome experience is equal, which is why this law is needed to encourage the various authorities in Northern Ireland to support it. In our newspapers recently we read the story of little Jacob Smyth, whose mum and dad, Ciara and Adam, helped to set up a charity called Joy 21 after he was born. That charity shares the very positive message of what having a Down’s syndrome child means, and all the things that can be done to ensure that that child has a full and fulfilled life. There is no doubt that if a child is raised in a positive atmosphere, no matter what disadvantages people may say are involved, that positive environment will help to create the circumstances of a full and vital life.

Another positive story is that of Grace Wilson, a 14-year-old girl from Newtownabbey. When she was born, people were saying to her mum and dad, “Sorry about the circumstances.” The parents were not sorry about the circumstances; they were joyous to have a lovely little girl, and that little girl has exceeded all their expectations, because mum and dad made sure that she was mainstreamed, and was seen not as different and excluded but as part of our society. That is what changed little Grace’s life and made her exceed all her parents’ expectations.

If we limit people’s expectations by lowering their horizons, they will have less fulfilled lives. If we allow them to aim for the highest horizons possible, they will have the most fulfilled lives possible. The Bill allows that to happen, because it makes it clear that the Government must take account of the specific needs of people with Down’s syndrome when exercising their “relevant functions”, and must have due regard to the guidance issued by the Secretary of State when exercising those functions as set out in the Bill.

Another story is that of William Graham, a councillor from Bushmills in my constituency whose son has Down’s syndrome. That lad has always been part and parcel of the community, and he and his parents exemplify the fact that there is nothing different here—“nothing to see here”. This young lad leads a normal life. He works on a farm like other kids in the area, and has grown up to become a key member of his community.

We must ensure that this Bill allows people to see that where there is difference there must be equality—that where there is difference we can also be equal. I hope that the legislative assembly in Northern Ireland, the Scottish Parliament and the Welsh Assembly will all grant legislative consent. I believe that today is a landmark day, which will go down in history as the day when this process really got under way, and that our legislators will follow in this groundbreaking and world-leading piece of legislation. I commend it to the House. I also thank the Minister for the note that she gave us all earlier this week, indicating that the Government support the Bill and want to drive it forward.

Photo of Flick Drummond Flick Drummond Conservative, Meon Valley 10:19 am, 26th November 2021

My neighbour Matilda has Down’s syndrome. She is now 14, and I have watched her grow, develop and participate fully in family life. I have seen her going to school, running, cycling—occasionally somewhat precariously—and playing tennis, as well as being part of a street dance team. Life seems pretty typical for her. She goes to a mainstream school, Admiral Lord Nelson School in Portsmouth, where she is very much part of school life.

Yet I am aware of the barriers placed in the way of Matilda’s development, from accessing the school of her choice to having the right healthcare and, particularly, appropriate speech and language provision. Some of the simplest decisions are made very tricky because, although the decision of the parents and the individual is often taken into account, they have to interact with many Government agencies, as others have mentioned, which takes time. They sometimes have to fight for provision, which takes time. All of this is happening when they are just trying to enjoy family life.

From early on, I became acquainted with an incredible organisation in my then constituency called Portsmouth Down Syndrome Association, which has paved the way for many children in Portsmouth and the surrounding area, including Meon Valley and beyond, to be properly supported in education and to be given better access to healthcare; their needs are better met because the charity provides training to the health professionals involved. It is a place where new parents can meet others straightaway and have a wonderful support network around them, but perhaps most importantly, because the charity is involved in so many areas of day-to-day life, the support can be taken for granted.

The celebration of inclusion means that Portsmouth and Meon Valley see these children everywhere. The awareness that has been raised by this charity through clubs, societies, nurseries and schools has meant that the path for children with Down’s syndrome has got a lot better than at any time I have known.

As the MP for Meon Valley, I now have the founders of Portsmouth Down Syndrome Association, Rachael Ross MBE and Ken Ross, as my constituents. I cannot see them in the Public Gallery, but I know they are listening because they have been on the radio and various other media over the past few days. They have been instrumental in helping with this Bill. Many hon. Members will have met their son Max at the drop-in event on Tuesday, and I have followed his progress through school and into college. I have seen what he has managed to achieve through properly adapted processes delivered by this charity, and I am excited for his future.

However, from speaking to many colleagues, I know these stories are not typical of the outcomes, or at least of the outcomes they are aware of in their constituencies: families with little support from external bodies and children who are faced with struggle at all stages of their childhood, with very little prospect of employment as adults.

Mencap and NHS England reported in 2018 that only 6% of adults with a learning disability who are known to local authorities had a job. It is fundamentally not right that, due to a lack of awareness, in many parts of the country people with Down’s syndrome do not have the same opportunities that I see supported and delivered where I live by Portsmouth Down Syndrome Association.

It is also not right that these services have to be delivered by charities, when the state, with specialist advice, is capable of stepping in to support in these areas. As a consequence, when my good friend and colleague, my right hon. Friend Dr Fox, tabled the Down Syndrome Bill, I jumped at the chance to support him. I am honoured to be a sponsor of this Bill.

The framework delivered through this Bill will have lasting and far-reaching benefits for people with Down’s syndrome in England. I pay tribute to Ken and Rachael Ross and to Annabel Tall for all their work on this landmark Bill. I am extremely grateful that the Government have agreed to back the Bill, and I look forward to ensuring it becomes an Act that will help to transform lives.

Photo of Meg Hillier Meg Hillier Chair, Public Accounts Committee, Chair, Public Accounts Committee 10:23 am, 26th November 2021

I also congratulate Dr Fox and pay tribute to Portsmouth Down Syndrome Association. I grew up in Portsmouth, and it is not a big place, but the association has a reach that seems to have helped Members on both sides of the House and across the country. I thank the National Down Syndrome Policy Group and the all-party parliamentary group for Down syndrome, which between them have led to the right hon. Gentleman tabling this world-leading Bill.

Just before the 2019 election, there was a lonely group of women standing in the Upper Waiting Hall with an exhibition about the challenges of being parents of children with Down’s syndrome—everything from maternity to education. It was bad luck they chose a difficult time to be here. I was about the last person in the building, and they were not able to speak to many Members, but they were determined and others since have been determined, and they have led to this point today. They got the all-party parliamentary group going and this Bill in place. It is always tempting when we get the chance to run a private Member’s Bill, because we get so many requests, so I pay tribute to the right hon. Gentleman for choosing this issue.

The Bill is long overdue. People with Down’s syndrome have additional challenges, but they are human beings and they have human rights. This is, in essence, human rights legislation.

We know the challenges: the National Audit Office and the Public Accounts Committee, which I have the privilege of chairing, have highlighted the lower health outcomes of people with learning disabilities in general, and there are particular issues for children and young people with Down’s syndrome. There is currently no specific requirement for people with Down’s syndrome to receive adapted services so, by obliging the Secretary of State to provide guidance, the Bill is a really important step. That guidance is needed in so many areas, including health, education, social care and, crucially, employment.

The right hon. Member for North Somerset highlighted the important issue of life expectancy, which was echoed by Sir Charles Walker. So many parents are worried about what will happen to their child as they grow up. People with Down’s syndrome are living longer, which is fantastic news, but any parent of any child with a disability, including a child born with Down’s syndrome, worries about what will happen to them. The state has needed to step up for some time, so I congratulate the Minister for giving the Bill a fair wind today, because it will provide some reassurance to parents.

I wish to pay tribute to my constituent Godwin, who is 17 and whose parents, to whom I also pay tribute, have spent some time sharing their experience with me. Godwin has been mainstreamed through education in Hackney and is now in sixth-form college, but he is approaching a difficult point and there is a challenging time ahead. It has not been an easy ride all the way through, but employment is the next step. His parents tell me that they are told too often that catering is the answer. As others have highlighted, only 6% of people with learning disabilities are in employment. There have been prejudices in maternity care and information and in education; we need to see that step change and the provision of support for a range of employment opportunities. That will be a challenge.

The Bill is right to require the Secretary of State to provide guidance, updated as necessary. We have previously had debates about what someone is paid to do a job and what a job is; a job is about human dignity and purpose and we should not write people off when they have come through mainstream education or narrow their opportunities. There are people with Down’s syndrome who are mainstream actors and mainstream in other roles, but they are the exception, not the rule. I hope the Minister will work with colleagues across Government to make sure that these issues are raised in other Departments.

There is currently no formal advice, even in respect of education. Godwin was well supported, but even then there were challenges. It is not difficult to train teachers. If people are trained in how to speak to someone with Down’s syndrome and explain what is required of them, that will benefit all children in the classroom.

One thing that I have learned about people with Down’s syndrome is that they are incredibly patient, but now is their time. They have waited long enough, and we must do all we can to ensure that this legislation leads to the correct services and support being available to them. The Bill is the first step, but, as we have highlighted repeatedly, paid employment is an issue, education support is patchy, health outcomes are still poor and parents worry about their children as they become adults.

This is a human rights Bill, but we need not just to pass it; we need to challenge the Government—I know the Minister will be up for this—to set metrics and targets and to measure every year the progress we should see in outcomes for people with Down’s syndrome. There is still a lot of heavy lifting to do. This Bill is a welcome beginning, but I think everyone in the Chamber stands four-square with the Government and the right hon. Member for North Somerset, and with all people with Down’s syndrome in this country and their families, in saying that we will keep watching and make sure that this legislation is implemented by this Government and Governments to come.

Photo of John Lamont John Lamont Conservative, Berwickshire, Roxburgh and Selkirk 10:29 am, 26th November 2021

I am delighted to speak in this debate. Like others, I congratulate my right hon. Friend Dr Fox on bringing the Bill forward and championing this worthy cause. I also pay tribute to the tireless work of others involved in this important campaign. Indeed, earlier this week I had the pleasure of meeting Tommy Jessop, who has been instrumental in spearheading the campaign.

A legitimate question might be why I am speaking in today’s debate, since hon. Members will be aware that health policy is a devolved responsibility of the Scottish National party and Green Scottish Government in Holyrood, so the Bill before the House does not extend to my constituents in the Scottish Borders. Given how much the Bill will improve services and life outcomes for those with Down’s syndrome, as we have heard throughout the debate, I am disappointed that corresponding legislation has not yet been introduced in Scotland. I am conscious that Douglas Chapman, who is representing the SNP today, has indicated his support for the Bill; I think we would agree that we both want to see the SNP and Green Administration in Edinburgh bring forward similar legislation in Scotland as quickly as possible.

This Bill places a statutory duty on relevant authorities in England to ensure a level playing field for people with Down’s syndrome within the wider group of those with learning difficulties, so that the specified authorities take specific account of the unique needs of people with Down’s syndrome when planning, designing and providing services. I call on the Scottish Government to ensure that that level playing field does not stop at the border, just south of my own Scottish Borders constituency. One baby in every 1,000 born in the United Kingdom is born with Down’s syndrome, and around 40,000 people living in the UK today have Down’s syndrome. Of course, many of them live in Scotland, so I hope my participation in the debate will raise awareness in Scotland and highlight the need for this important legislation to be introduced across the entirety of the United Kingdom.

Turning to the Bill itself, clause 1(1) states:

“The Secretary of State must give guidance to relevant authorities on steps it would be appropriate for them to take in order to meet the needs of persons with Down syndrome in the exercise of their relevant functions.”

After the guidance is published by the Secretary of State, the Bill imposes on relevant authorities a duty to have due regard to it. My question to my right hon. Friend the Member for North Somerset is how a postcode lottery will be avoided in that scenario, given that different authorities will be able to have different due regard to the guidance and subsequent delivery and provision of the various services. Perhaps, during the course of the debate or in later discussions, he could clarify how that postcode lottery might be avoided.

I am very pleased to be able to speak in this debate. Although it is related to services in England, it raises awareness of the increasing support, recognition and opportunities for those living in Scotland and in my constituency in the Scottish Borders who have Down’s syndrome. I pay tribute again to my right hon. Friend for introducing this Bill.

As we have heard today, Down’s syndrome affects a person’s development in many ways, but it is not the most important influence in how that person develops and lives their life. What happens after birth is far more important in shaping the outlook for a person with Down’s syndrome. Many people with Down’s syndrome are likely to need some level of support to enable them to achieve the same kind of life most people take for granted, so I am delighted that this Bill is before us today and goes some way to delivering those aims. I commend the Bill to the House.

Photo of Suzanne Webb Suzanne Webb Conservative, Stourbridge 10:33 am, 26th November 2021

I thank my right hon. Friend Dr Fox. I am thrilled to be here in support of this Bill, a Bill that will destigmatise Down’s syndrome, and its ambitions. Ian Paisley asks, “Why didn’t we think of this before? Why haven’t we done this sooner?” and he is right.

When I was doing my research for the debate, I found the information online about the syndrome very factual. It fails to say what amazing people those with Down’s syndrome are: people who make significant positive contributions to society, living fully independent and semi-independent lives, achieving more than ever, attending mainstream schools, passing exams, gaining employment, getting married and, of course, becoming actors.

From the age of 17, I spent 13 years doing Birmingham PHAB Camps, which are holidays for those with a physical or mental impairment or learning difficulty, including those with the syndrome. The other half of the group were those who were socially disadvantaged. The aim of the holidays was integration and, of course, a thumping great holiday. The important thing about the holidays was that, by midweek, there was a blurring of lines about who we were. No one would have been able to tell the difference between volunteers, people with a learning difficulty or physical impairment, or those who may have had Down’s syndrome.

The holidays achieved their aim and were such great fun. They were the best one-week holidays ever, learning the importance of inclusivity and parity of esteem for all. It was about integration of everyone, regardless of perceived disability. It was about integration of everyone, regardless of perceived disability. It was about independence for those on the holiday; everyone had a role to play. At the start of the week, there was a distinct unfamiliarity with those who were perceived to be different. By the end of the week, there was total integration and a clear understanding that a disability does not define anyone. It showed how important it is to ensure that where possible, those with the syndrome can live a life of independence, and that they should not be marginalised or seen as a problem. My right hon. Friend the Member for North Somerset, in wrapping up, said basically that we should be defined not by who we are, but by our talents, and I completely agree. We should not be defined by a physical, mental or learning disability, and no one should be defined as a second-class citizen.

Those holidays were just the best times—rattling around the Welsh countryside in beat-up minibuses, days on the beach and the infamous last night party. The holidays were also very much about friendships and connection, and I have so many fond memories. We all have a unique connection for our whole lives, and many of us are best friends for life—Tommy, Dave, Dawn, Nursey, big Dave and fit Dave, and not forgetting young Claire and Nobby, to name but a few of you all.

If this Bill supports in any form the desire to re-educate both the public and professionals about those with Down’s syndrome, and the advances—including in life expectancy—that have occurred in recent decades for Down’s syndrome, it has my support. Of course, this Bill does just that. It will not fix everything, but I welcome it because the principles are so important—enabling people to live as independent and prosperous a life as possible. To do this, it is important that we recognise their specific healthcare, educational and housing needs, and that local authorities play their part. That is not mission impossible, surely, and this Bill is a good start.

It is so important that we get the language right, and this Bill does so. It is a Bill that is set to improve the lives of people living with Down’s syndrome, who just need chances in life, like everyone else. I am delighted that it will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.

The Bill aims to ensure that certain health, education and local authorities take account of the specific needs of people with Down’s syndrome when exercising their relevant functions. That builds on the Government’s stated commitment to improve outcomes for people with a learning disability; support those with Down’s syndrome and their families, who have struggled to access services; and improve support in schools and social care support. The Bill aims to address those issues by providing guidance to authorities on how to meet the needs of persons with Down’s syndrome when carrying out their existing duties in certain specific areas.

It has been questioned whether the Bill’s aims will be achievable, particularly around destigmatisation. I do not agree with that, however; I believe that any step or measure will be a huge leap in the right direction. I understand, too, that there are some concerns about whether the guidance alone will produce the desired outcomes, and about the approach of breaking out Down’s syndrome from other learning disabilities or chromosomal disorders. The duties do not require, and are not intended to result in, enhanced treatment being given to those with Down’s syndrome over and above other groups, especially those with learning disabilities.

I hope at a future time to be having a similar debate about DiGeorge syndrome. While Down’s syndrome is caused by having an extra chromosome at birth, DiGeorge syndrome is caused by a problem with a person’s genes, called 22q11 deletion. It is hot on the heels of Down’s syndrome in terms of its prevalence in society, and I very much hope to bring it to the House’s attention. I hope that all who are participating in this debate will join me in a future debate to raise awareness of DiGeorge syndrome. For those who have the syndrome, or for family members who need support, I highly recommend Max Appeal.

I wonder whether the Minister can help me. The Government have announced investment in “generation genome”, a pioneering newborn screening programme to detect more than 200 rare diseases. That is part of a £95 million investment in the Office for Life Sciences, I think. Do we know whether 22q will be part of that? If it is, that would be a beyond huge step forward.

Finally, I dedicate my speech to Mark Chadwick, who was born with Down’s syndrome. And I say, so what? I have known Mark since 2015, and he has been a trusty steed since we first met—a charming, bright, engaging individual with a passion for dancing and politics. He recently applied to be a town councillor. I am very proud to call him my friend. He is a fine example of why the Bill is so important, and I am sure that he would agree with George Webster: why did we not think of this before? I 100% support this most excellent Bill.

Photo of Greg Smith Greg Smith Conservative, Buckingham 10:40 am, 26th November 2021

I rise to speak entirely in support of this Bill receiving its Second Reading today, and hopefully travelling at pace through its whole passage through both Houses and to Royal Assent before World Down Syndrome Day on 21 March next year.

As my right hon. Friend Dr Fox—whom I warmly congratulate on bringing this Bill forward—has set out in his superb opening speech, the Bill is so important as it aims to improve services and life outcomes for people with Down’s syndrome, amounting to some 47,000 people across the country. The Bill will particularly make England —I share my right hon. Friend’s ambition in time for it to be our whole United Kingdom—a better place to grow up and live with Down’s syndrome, bringing fairness to a group of people who, I am sorry to say, are too often marginalised. It will promote the rights and welfare of people who have Down’s syndrome at all levels of society, and raise awareness and understanding of it.

Fundamentally and importantly, the Bill will force education, health and local authorities in England to take people with Down’s syndrome into account when providing services, and will establish a national strategy for equality. Of course, most children with Down’s syndrome will learn to read and write, and go to a local mainstream school like other children. They will also rightly take part in many other activities that are on offer to all. Life should be as broad and fun-packed as that of any other child. Yet clearly, many daily challenges remain for those impacted by Down’s syndrome. One constituent of mine, Kate, contacted me about her two-year-old daughter who has Down’s syndrome. My constituent wrote:

“She is a bright, funny, gorgeous, amazing little girl. But already in her short life I have struggled to get her the help she deserves and needs. Covid has obviously played its part, but the issues are more ingrained. I am looking to the future and can see the battles ahead, the fights I know I will have. This needs addressing. It shouldn’t be like this.”

Those are wise words from my constituent. I very much hope that the Bill will make life better for my constituent and so many other families.

The Bill will transform the lives of people living with Down’s syndrome, and it is especially welcome that the Government have committed their support to it and will equally consult widely on the proposed guidance, ensuring that the voices of those with Down’s syndrome, their families and carers are heard, and that the guidance is fit for purpose. That is essential.

Provisions in the Bill will enable adults with Down’s syndrome to live, work and join in with confidence and independence, fully included in society alongside their friends and peers. Critically, I am hopeful and confident that the passage of the Bill will go a long way to destigmatise—we heard that word before and it cannot be restated often enough in this debate—Down’s syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. As my right hon. Friend said in his opening remarks, for the first time people with Down’s syndrome are beginning to outlive their parents. If we do not make provisions for this, I fear that there will be tragic consequences in the future when it comes to care.

I entirely support the Bill and am delighted that the Government equally support it. I look forward to seeing it progress rapidly through Parliament.

Photo of Elliot Colburn Elliot Colburn Conservative, Carshalton and Wallington 10:44 am, 26th November 2021

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

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

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

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

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

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

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

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

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

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

Photo of Douglas Chapman Douglas Chapman Shadow SNP Spokesperson (Small Business, Enterprise and Innovation)

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

Photo of Elliot Colburn Elliot Colburn Conservative, Carshalton and Wallington

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

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

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

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

Photo of Sally-Ann Hart Sally-Ann Hart Conservative, Hastings and Rye 10:53 am, 26th November 2021

I also welcome the introduction by my right hon. Friend Dr Fox of this very important Bill, which, when passed, will lead to the establishment of a national strategy to improve provision and outcomes for all those living with Down’s syndrome in England. The Bill will legally recognise people with Down’s syndrome as a specific group, ensuring that they are protected along with other minority groups.

Current Government policy focuses on recognising and addressing the inequalities and premature mortality of people with learning disabilities. Policy does not differentiate between different parts of the population except where there is clinical justification, and we have seen during covid that people with Down’s syndrome are particularly at risk from that disease and classed as clinically extremely vulnerable. The aim of this Bill is to ensure that people with specific challenges caused by Down’s syndrome are given the right support by local authorities, which are to be given guidance on appropriate steps to take to meet specific needs, building on the Government’s stated commitment to improve outcomes for people with a learning disability.

It is important that children with Down’s syndrome attend mainstream schools, but too many are still sent to special schools, although that varies between local authorities. When I was in my early teens my mother spent a couple of terms as a supply teacher at a special school in Hexham, Northumberland. She absolutely loved it—loved her pupils, loved teaching them—and found it so rewarding and such an honour to teach children with a variety of intellectual and learning disabilities. We were lucky as her daughters that she had the initiative to get us in to visit from time to time, opening our eyes—our minds, hearts and souls—to those who may not be quite the same as us but are still very much loved and valued members of our society. It also taught us that people are different and this is what makes us all so special as human beings.

We all want equal opportunities for people to believe in us as individuals. This Bill will place a requirement on every school to meet the needs of pupils with Down’s syndrome, giving them a choice about which school to attend. As society becomes, perhaps a bit too slowly, more inclusive, life is changing for people with disabilities, including Down’s syndrome. Mainstream education is becoming more common, and this has brought considerable benefits to all children. There is no doubt, however, that it can be challenging at times to include a child with Down’s syndrome in the classroom, as it can be with any child with a learning disability, and teachers would need training to better understand the condition, including in helping pupils with Down’s syndrome to improve their speech and language and helping them to reach their optimal communication skills, as well as ensuring all children can access the curriculum.

Many parents in my constituency have complained to me that they have to fight sometimes for an education, health and care plan. It is shocking that some children with Down’s syndrome—a well-known learning disability with a well-known need for good early educational intervention—do not have a full-time EHCP and that some do not even have one at all. Not having a plan means the right provisional support system is not available for them or even that they have no support whatsoever.

Research shows that mainstream schooling produces better outcomes for children with Down’s syndrome and that students with Down’s syndrome gain academic, social and behavioural advantages from being educated with their typically developing peers in mainstream school. With appropriate support and accommodations, students with Down’s syndrome can benefit from mainstream schooling, and inclusive education has benefits for all students.

My daughter, who is now an adult, had the joy of going to primary school with a classmate who had Down’s syndrome. She enriched her classmates’ lives, and as they all got older and started to notice that she was different they did not treat her any differently: to them she was her, and absolutely perfect as she was— someone they had carefully grown up with. As they got older it also helped them to be more caring and considerate. Unfortunately, their friend was not allowed to stay with her friends beyond middle school; that was not only sad for her and her family, but was a loss for her friends and the school.

I also want to briefly highlight the lack of job opportunities for people with Down’s syndrome, as has been mentioned. There are around 40,000 people with Down’s syndrome living in the UK and only 6% are employed; we should think of the isolation and loneliness of the 94%. I want to take this opportunity to thank Little Gate Farm for all the work it does to help and support people with learning disabilities near me. This Bill aims to improve employment rates for adults with Down’s syndrome. We must unleash the potential of everyone, including people with Down’s syndrome, to give them the opportunity to show us all what they are truly capable of and to ensure they get the same chances as everyone else.

This is about levelling up—levelling up individuals. It is right and just to give people with Down’s syndrome recognition of their specific needs and give them the dignity of a human person. It is never too late to be who we want to be, and never the wrong time to do the right thing.

Proceedings interrupted (Standing Order No. 11(4)).