Down Syndrome Bill
Friday 26th November 2021
(3 years ago)
Commons ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text
Dr Liam Fox (North Somerset) (Con)
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 the Member for Bolton North East (Mark Logan), the hon. Member for Bristol North West (Darren Jones), my hon. Friends the Members for Bury North (James Daly) and for Carshalton and Wallington (Elliot Colburn), the hon. Member for Ceredigion (Ben Lake), my hon. Friend the Member for Don Valley (Nick Fletcher), the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), my hon. Friend the Member for Meon Valley (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 the Member for Chichester (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.
Robert Buckland (South Swindon) (Con)
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.
Mark Pawsey (Rugby) (Con)
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.
Dr Fox
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.
Lia Nici (Great Grimsby) (Con)
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?
Dr Fox
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.
Ruth Jones (Newport West) (Lab)
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?
Dr Fox
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.
Ian Paisley
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.
Dr Fox
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.
Douglas Chapman (Dunfermline and West Fife) (SNP)
I thank the right hon. Member for North Somerset (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.
Sir Charles Walker (Broxbourne) (Con)
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 the Member for North Somerset (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.
Ruth Jones
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?
Sir Charles Walker
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.
Dr Fox
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.
Sir Charles Walker
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 the Member for Welwyn Hatfield (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 the hon. Member for Newport West (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.
Ian Paisley (North Antrim) (DUP)
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 the right hon. Member for North Somerset (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.
Mrs Flick Drummond (Meon Valley) (Con)
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 the Member for North Somerset (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.
Dame Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)
I also congratulate the right hon. Member for North Somerset (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 the hon. Member for Broxbourne (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.
John Lamont (Berwickshire, Roxburgh and Selkirk) (Con)
I am delighted to speak in this debate. Like others, I congratulate my right hon. Friend the Member for North Somerset (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 the hon. Member for Dunfermline and West Fife (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.
Suzanne Webb (Stourbridge) (Con)
I thank my right hon. Friend the Member for North Somerset (Dr Fox). I am thrilled to be here in support of this Bill, a Bill that will destigmatise Down’s syndrome, and its ambitions. The hon. Member for North Antrim (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.
Greg Smith (Buckingham) (Con)
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 the Member for North Somerset (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.
Elliot Colburn (Carshalton and Wallington) (Con)
I congratulate my right hon. Friend the Member for North Somerset (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.
Douglas Chapman
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.
Elliot Colburn
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.
Sally-Ann Hart (Hastings and Rye) (Con)
I also welcome the introduction by my right hon. Friend the Member for North Somerset (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)).
Down Syndrome Bill
Wednesday 26th January 2022
(2 years, 10 months ago)
Public Bill CommitteesRead Full debate Down Syndrome Act 2022 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
The Chair
The selection and grouping of amendments for today’s meeting is available online and in the room. I have selected the three amendments in the name of the Member in charge of the Bill, Dr Liam Fox. The amendments will be considered alongside the existing content of the Bill in a single debate.
Clause 1
Guidance on meeting the needs of persons with Down Syndrome
Dr Liam Fox (North Somerset) (Con)
I beg to move amendment 1, in clause 1, page 1, line 10, at end insert—
“(4A) The Secretary of State must lay the guidance before Parliament once it is published.”.
This amendment requires the Secretary of State to lay guidance under clause 1 before Parliament.
The Chair
With this it will be convenient to discuss the following:
Amendment 2, in clause 1, page 1, line 12, leave out “(4)” and insert “(4A)”.
This amendment is consequential on Amendment 1.
Clause stand part.
Clause 2 stand part.
That the schedule be the First schedule to the Bill.
Amendment 3, title, line 1, leave out from “syndrome;” to second “and” in line 3.
This amendment brings the long title into line with the content of the Bill.
Dr Fox
Those watching our proceedings may be surprised at the brevity of our discussions today. It is worth explaining to them that that is not due to any lack of scrutiny in Committee, but to the fact that the Committee has reached consensus before we have come here. We have worked together across parties to deal with the issues that we thought were important. This is a very good example to those who watch Parliament that when Parliament really wants to get something done and Members believe that they are engaged in a worthwhile task, the work can happen in the most efficient way possible.
I thank colleagues for their work in bringing us to this point. I thank the Minister for her outstanding work. Having once been the Friday Whip in charge of private Members’ Bills, I am an example of gamekeeper turned poacher—although that does bring some advantages, including how to get the best out of the Minister. We have very much benefited from having a Minister with personal experience of a family member with Down syndrome. It is also a very good example of why our system of constituency MPs, with our backgrounds and experience, is a very good one when it comes to appointing people to ministerial office.
I thank officials for their work. They have been tireless in trying to bring what were initially some relatively large differences to a position of consensus. I thank colleagues from across the House who are not on the Committee for their support on Second Reading and in campaigns across constituencies to gain support for the Bill.
I thank the public for the widespread support that we have had on the issue. I thank in particular those Down syndrome groups who have gone out of their way to provide support to Members, with anecdotes about personal experience and what they expect from our legislation. It is a pity that there seems to be a small number of people out there who were questioning the measures in the Bill even before they knew what was going to be debated in Committee today. I hope that they will recognise that the intent of the Committee is very clear.
On Second Reading, there was a very clear omission in the Bill. We chose to leave it and deal with it in Committee, rather than inserting a half-baked measure that we would subsequently have to change. The omission was that it was not very well set out how the rights in the Bill could be enforced, for those who wanted to exercise them, and how that could best be redressed. There were two things that I really wanted to see and I am very pleased that the Government have accepted them. I look forward to my hon. Friend the Minister recommitting to those today.
First, if we have new integrated care pathways and integrated care boards, should it not be the responsibility of a named individual to ensure the application of the measures in the Bill, should it become law? In other words, should there not be someone to whom those with Down syndrome or their parents can go, to ensure that the process has been properly applied? Not having that provision would be a serious omission. I look forward to the Minister confirming that there will be a named individual on each board who will be responsible for the application of the measures in the Bill.
Sir Robert Goodwill (Scarborough and Whitby) (Con)
Does my right hon. Friend believe that the Bill creates a precedent for other conditions such as 22q11.2 deletion syndrome, which affects a smaller number of people but manifests in a similar way?
Dr Fox
The Minister may say something about that when she makes her remarks, but it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to other conditions of that nature.
Again, the fact that the guidance will be laid before Parliament gives us an opportunity in Parliament to deal with the very issues that many Members have reasonably raised. As all colleagues will know, we put Down syndrome as the only condition because of the difficulty of getting a private Member’s Bill through. Getting support requires it to be simple and concise. The fact that the guidance is laid before Parliament enables us to take the legislation forward in a proactive way without too much actually being said in the Bill. That is a good model for how we can take legislation of this nature through in future. I am grateful to my right hon. Friend the Member for Scarborough and Whitby and congratulate him in Committee for the first time on the honour recently—belatedly but very justifiably—bestowed on him.
I go back to the point: the fact that the guidance is laid before Parliament gives us all the chance, on behalf of our constituents, to look at some of these other conditions. If it applies for Down syndrome, why should it not apply in the same way and through the same mechanisms for other conditions? That is an important issue for the Committee to have addressed. With that, I conclude my remarks.
Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)
I only want to thank everybody across the parties who worked so hard on the Bill; it has been so heartening to see Parliament come together on something so important. As chair of the all-party parliamentary group on Down syndrome, I have had so many emails from people who are right behind the Bill and think that it will be ground breaking in giving them the recognition that they feel is so important in their lives and for their families.
This is an important piece of legislation, and I thank everybody who has contributed to it. The right hon. Member for North Somerset, who led it, has been exemplary in bringing people together and ensuring that the process is positive.
Layla Moran (Oxford West and Abingdon) (LD)
I add my thanks to everybody, but especially to the right hon. Member for North Somerset, for bringing this Bill. I agree that the emails we have had have been so heart-warming. My constituent Kelli, whose son Aaron has Down syndrome, said:
“I have three children, two older children without Down syndrome and Aaron. I have the same fundamental desire for each of them: that they are able to live happy and healthy lives, as far as possible, given the realities of life for us all.”
She says the Bill gives her enormous hope. I am sure the hon. Lady has had many similar emails.
Dr Cameron
Absolutely. That is the important reason we are all here—to make a difference to constituents’ lives. The hon. Member has shown that the Bill will have a positive impact on her constituent’s life; I am sure that across the Chamber we have all had many similar emails. The right hon. Member for North Somerset addressed some of the hopes for other conditions, which were also raised with me. I am pleased to support the Bill wholeheartedly and to have seen it progress so rapidly.
Karin Smyth (Bristol South) (Lab)
I congratulate my neighbour, the right hon. Member for North Somerset, on his work and on bringing together so many colleagues across the House. Everyone has worked enormously hard on this Bill. I thank the Minister for her co-operation. We should have more poachers turn game keepers—they are all terribly welcome.
As Members have said, the families of the 40,000 people with Down syndrome are all watching and listening to the debate carefully. As my hon. Friend the Member for Nottingham North (Alex Norris) previously said, we take every opportunity to remove all the barriers and to tackle stigma and the poverty of ambition that hold back progress in this area. The Bill is the perfect opportunity to do that, particularly around housing, mental health provision and education—all key areas that can really improve and empower those with Down syndrome across the country.
I welcome the Bill and the amendments. As the Minister said in the last debate, the Government recognise that the legal duties and frameworks are already in place. The duty under the Care Act 2014 is to assess people based on need and not diagnostic categories. It is vital that every person’s needs are met to ensure that they can fulfil their potential in their lives. This Bill is about people, not a condition; as it is implemented, we need to recognise that every individual will have their own specific needs. Social care is facing unprecedented strain, so new responsibilities must come with an assessment of investment.
I welcome the Department’s commitment that new guidance will be formed in consultation with partners, and a new burdens assessment will be undertaken ahead of that guidance. As you know, Ms Elliott, having chaired some of the sittings, I spent six weeks in Committee on the Health and Care Bill throughout the autumn. The provisions about having a named accountable person on the integrated care system and the guidance are very important and welcome developments. If the Government could learn from this Bill and take that approach more widely to the current legislation and other legislation, that would be not only good practice but very welcome for Members of Parliament and our constituents.
Our constituents expect us to see guidance and perhaps be part of scrutinising it, raising objections and problems and improving it—that is the role of a Member of Parliament—before that guidance is developed by organisations that are not accountable in the same way and imposed on our constituents. Bringing that circle back, so that Parliament has a greater role in the guidance, is really a very important step, and I hope that that starts to permeate not only the Department of Health and Social Care but other Departments and, indeed, current legislation.
I very much commend the right hon. Member for North Somerset for introducing amendments 1 and 2. They will be landmark—really important. I commend the Minister for working with the right hon. Gentleman to agree to them, and I thank everybody involved in the Bill. I agree with the right hon. Gentleman: this is an example of how Parliament and the proper role of Members of Parliament can be made real. That is only for the good of our constituents.
The Minister for Care and Mental Health (Gillian Keegan)
It is an absolute pleasure to serve under your chairmanship, Ms Elliott; I think it is the first time. I am delighted that the Bill has received the same endorsement today from across parties as it did on Second Reading. What can I say? My right hon. Friend the Member for North Somerset has really set an example to all of us. I guess that is the voice of experience—30 years in various roles around this place, which have enabled him to optimise and maximise the situation and to get all colleagues rowing in the same direction. It is very important for a Member to do that if they are to get their private Member’s Bill into legislation; as we know, that is not typical.
Some 47,000 people in the UK have Down syndrome. It cannot be right that people with Down syndrome and their families should have to fight for access to appropriate services. I have seen this personally, as my right hon. Friend mentioned, with my nephew Joseph Gibson. Although Joseph is now happy and thriving—he is 15 now —it has not always been easy for my brother Marcus and sister-in-law Sara to secure the support that they need and that meets his needs.
That is what we want to change through clause 1, which provides that relevant authorities will be issued with guidance that they will implement locally. The guidance will enable those authorities to understand the needs of people with Down syndrome and how best to meet them. Of course, we will consult widely on the development of the guidance.
Once the guidance is published, the Government will keep it under regular review and update it periodically to ensure that it remains fit for purpose. It is very important that, when going through the clauses of the Bill, we put the right things in place, and that we do that with wide consultation. I thank my right hon. Friend for tabling the amendment to require the Government to lay the guidance before Parliament upon publication, because people here have a lot of experience and a lot to give. I am pleased to support amendment 1, which will bring this important guidance to the attention of Parliament once it has been published.
Dr Fox
As well as the issue of other conditions, employment and employment law were raised a great deal by the public, although we did not address those issues in the Bill because of the complexity that they would bring. Will the guidance given by the Secretary of State include employment issues, so that those issues can be addressed without requiring further legislation?
Gillian Keegan
First, I will deal with rare genetic disorders other than Down syndrome. We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance. I will go on to address employment.
I commit that the Secretary of State will ensure through statutory guidance that the integrated care boards will have a named lead for overseeing the implementation of the guidance issued under the Bill. That named lead will ensure that Down syndrome statutory guidance is implemented and considered throughout the commissioning decisions of an integrated care board. That will play an important role in ensuring that there is accountability for improvements at the local level and that the intentions behind the Bill are fully raised across Government.
Sir Robert Goodwill
Does the Minister accept that while many Down syndrome sufferers can get into the workplace and make a real contribution, there are others who are very profoundly affected—who cannot communicate and have great behavioural problems? I know that from experience with my wife’s family. These are not the Down syndrome sufferers who we see in the media; these are people who often have to be kept in a controlled environment with 24-hour care.
Gillian Keegan
Down syndrome is a condition that has a very wide spectrum of abilities, as many conditions do—and as we all do, as people. Of course, the right support has to be provided for a whole range of different capabilities. We were talking about a particular case, and how important it is to get early access to speech therapy and to hearing aids so that people can develop language. It is very important to be able to maximise life chances.
Employment will differ for different people. The Government offer a range of programmes to support people with disabilities—learning or physical—to get into and stay in employment. All those programmes can also help people with Down syndrome. This includes the work and health programme and intensive personalised employment support programme, which offer personalised help and support for people with learning disabilities to get into work. The Bill creates the foundations to ensure that people with Down syndrome stay well, receive the right education, secure the appropriate living arrangements—the hon. Member for Bristol South mentioned the importance of the right support around housing—and receive support to transition into employment.
I feel proud that we can already see in our society that people with Down syndrome can secure meaningful employment. That is really important to their life, structure and self-esteem—as it is to all of us here today. We will continue to explore any steps required to make sure that people with Down syndrome can find work, where it is right for them and where that is part of their life’s journey. I expect to return to this issue in the development of the statutory guidance.
I would like to give a few examples, because all of us have met many people and seen the range of capabilities. Dilesh, who my team have spoken with, lives in Barnet with his family. He said he felt total inclusion at school, which was fundamental in providing him with the skills to secure a supported internship as a Project Search ambassador. Dilesh continued this role on a temporary basis and is working closely with his local jobcentre to find another job he enjoys. His mum believes the jobcentre has gone above and beyond to support him to reach his full potential.
We can also see big strides in representation that inspires people with Down syndrome to seek employment that truly matters to them. George Webster joined the BBC at 21 as the broadcaster’s first ever children’s presenter with Down syndrome. Ellie Goldstein, who has been a model since she was 15, has recently been in big campaigns for Gucci and Vogue while also studying performing arts.
On a world stage, George and Ellie are making big strides for representation and inspiring children, young people—not just with Down syndrome but with learning disabilities in general—and adults everywhere. Of course, we must also mention Tommy Jessop, who was very much part of a fantastic show that we have all enjoyed, and of this Bill as well. There are many role models now, and it is fantastic that they are being celebrated and seen much more in roles on our TV screens and in the media.
Dr Cameron
The Minister is making some extremely important points. Would she agree with me that it is very important that as many hon. Members as possible also engage in the disability confidence scheme in the workplace, to help employ and offer work-experience placements to people with disabilities in their constituency offices? Is it not also important that Members consider supporting the Speaker’s disability internship programme, which has been very successful in this House?
Gillian Keegan
As one of the Ministers who is a disability champion, I completely agree. It is only when one tries to take a view from the perspective of someone who has some kind of disability that it becomes possible to understand how difficult it is to do many daily things. Whether it is people with physical or learning disabilities, the more that we understand their perspective the more we can accommodate them. That, of course, makes a massive difference for somebody who has more to deal with on a daily basis than perhaps we do. It is important that we all take up the training that we are offered.
I thank my right hon. Friend for tabling amendment 3, which updates the long title of the Bill. I agree with those proposals. As outlined, this guidance only applies to England, as healthcare, education and housing are all devolved matters. I know there is also firm commitment from my counterparts to improve the outcomes for people with Down syndrome in Scotland, Wales and Northern Ireland, including through legislation. I look forward to working collaboratively with the devolved Administrations on this matter.
Regarding the schedule, it is important to have clarity within the Bill about who the relevant authorities are, and what functions the guidance will apply to. The list of authorities and their functions has been drawn from existing legislation, such as the Care Act 2014, the Children and Families Act 2014 and the Housing Act 2004. For that reason, the Government support the schedule.
This Bill is hugely significant. It will improve the lives of people with Down syndrome, improve their prospects and improve their families’ lives. I am proud to support it on behalf of the Government as it progresses through Parliament. I thank all the hon. Members for their support. To be in this privileged position, and to be able to use that privilege to make a massive difference to people, is probably what brought most of us here. I thank everybody for their support of the Bill.
Dr Fox
One question that was often asked before Second Reading, and continues to be asked, is: “Why Down syndrome?” Many have written to all members of the Committee, I imagine, saying, “Why pick a particular condition? Why not simply have it lumped in with learning difficulties?” The point is that those with Down syndrome and their families know that it is much more than “just” another learning difficulty.
There is the addition of complex health conditions—very complex, in many cases. The changes in demographics, which we discussed on Second Reading—for the first time, many of those with Down syndrome will outlive their parents—bring an element of the importance of care into the equation. Rather than singling out a single grouping, we have shown the increasingly complex needs that a range of different conditions will require, as medical science improves and we have greater life expectancy, which is something we should celebrate, as a society.
The point has been made, as it was on Second Reading, that 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. We are talking about individuals who, I believe, have for too long been more vulnerable than they need to be, and were overlooked by a series of pieces of legislation, which did not adequately take into account the combination of needs that they uniquely have.
We all come to this Bill from our personal experiences. As I said in the Chamber, my personal experience is through growing up next door to someone with Down syndrome, from working with people with Down syndrome and, as a doctor, coming into contact with a lot of them. I would like to say a couple of things about what this Bill is not. First, it is not a UK Bill; we purposely took that decision very early on. We could have made it a United Kingdom piece of legislation, and effectively confronted the Welsh, Scottish and Northern Ireland Governments, saying, “You must give us the legislative consent.” That would not have been in the interest of people with Down syndrome. It would have made it a constitutional Bill, with the arguments becoming about constitutional propriety and not about those who are actually involved.
I hope that, with the House of Commons taking this decision, we will see legislation from the devolved parts of the UK giving equal rights to those who live under those devolved systems. It should not matter where someone lives in the United Kingdom; they should have access to the same quality services, the same representation, and the same parliamentary remedies as anybody else. That is why the Bill was designed as it has been.
Dr Cameron
I thank the right hon. Gentleman for bringing those issues to the attention of the Committee. The Scottish Government are well aware of the Bill and its merits. They have had discussions and indicated that they will be taking similar types of legislation through their own processes, to see progress made.
Dr Fox
I am obviously aware of the discussions that we have had around that. I hope that the devolved Administrations will look at the timetable of the Bill’s passage through Parliament and when it is likely to get Royal Assent, to ensure that there is no time gap between the rights of those with Down syndrome in England and those in other parts of the UK. Those who the devolved Administrations represent should expect no less.
My final thought is that, as with any piece of legislation, this Bill will not be perfect. No Bill is perfect and no Bill requires no further work or changes, but getting the legislation on the statute book is, in itself, a statement of intent. It is a statement of recognition of the needs of those with Down syndrome. We know that private Members’ Bills will generally be limited in scope if they are to get through the House of Commons, but I believe the amendments to the Bill have, as I said earlier, taken it from being a good and well meaning Bill to a landmark Bill: we have signalled not just intent, but how we will give effect to that intent.
All too often we pass legislation in Parliament that sets out great rights and therefore expectations, but we do not set out the mechanisms by which those expectations can be realised. That is the real importance of the amendments. They may look small today and may not be commanding the front pages tomorrow, because they were not accompanied by bottles of wine, but it is important that the Committee understands the importance of what we are about to vote for. We have shown, by setting the guidance in front of Parliament, that there is a link between those who require change and those who can institute the change. That is as it should be, and that is exactly what those we represent have a right to expect.
Amendment 1 agreed to.
Amendment made: 2, in clause 1, page 1, line 12, leave out “(4)” and insert “(4A)”.—(Dr Fox.)
This amendment is consequential on Amendment 1.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2 ordered to stand part of the Bill.
Schedule agreed to.
Amendment made: 3, title, line 1, leave out from “syndrome;” to second “and” in line 3.—(Dr Fox.)
This amendment brings the long title into line with the content of the Bill.
Dr Fox
On a point of order, Ms Elliott. To end our proceedings, I thank you for chairing the Committee, the Clerks for all the work they have done behind the scenes, the Hansard officials, the departmental officials, the Minister and all our own parliamentary teams, who have done a great deal of work. We may be the ones who get the front row seats, but we would not be here without those in our teams, who do all the work on our behalf. I thank all of them on behalf of the Committee for getting us to where we are today.
Bill, as amended, to be reported.
Down Syndrome Bill
Friday 4th February 2022
(2 years, 10 months ago)
Commons ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Dr Liam Fox (North Somerset) (Con)
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 the Member for Castle Point (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.
Ruth Jones (Newport West) (Lab)
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?
Dr Fox
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 the Member for Chichester (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.
Craig Williams (Montgomeryshire) (Con)
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?
Dr Fox
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.
Edward Timpson (Eddisbury) (Con)
It is a real pleasure to follow my right hon. Friend the Member for North Somerset (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.
Selaine Saxby (North Devon) (Con)
I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on introducing this Bill.
It is always a pleasure to speak on a Friday, when, the hon. Member for Newport West (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.
Laura Farris (Newbury) (Con)
I begin, as others have, by congratulating my right hon. Friend the Member for North Somerset (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 the Member for Eddisbury (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.
Ruth Edwards (Rushcliffe) (Con)
I commend my right hon. Friend the Member for North Somerset (Dr Fox) on the Bill and on his long-standing championing of people with Down syndrome. I know it stems from his time as a GP, his personal life and his time in this place.
The Bill is making an important simple but necessary change to improve the lives of people with Down syndrome. The issue matters to many people in Rushcliffe. I have heard from many constituents and organisations such as the National Down Syndrome Policy Group in praise of my right hon. Friend’s action and willing me on to support it. I am proud that the Government are supporting the Bill and to speak on the issue today.
I understand that people living with Down syndrome, their carers and families can find themselves disadvantaged by the inequality of access and the provision of basic services. My hon. Friend the Member for North Devon (Selaine Saxby) has set out some really personal examples of how that is affecting her constituents today.
Starting at a young age, people with Down syndrome face greater challenges in school and in life than their peers. I know that many parents of children with Down syndrome worry about sending them into mainstream education, where support may vary wildly. Other parents are left facing the cost of specialist support where help is not available locally. As a Conservative, I want everyone to have opportunity and choice. For some, specialist education might be the right path; for others it might be support in a mainstream school. The point is that people need to have choice. They need to be able to choose their own destiny and, at the moment, there are too many people with Down syndrome who are not able to do that. I am so pleased that the Bill will start to address that inequality.
Shockingly, although people with Down syndrome are likely to be hospitalised more often and for longer periods of time than people without the condition, there is little guidance for NHS commissioning boards or trusts on how best to care for their specific needs. Adults with Down syndrome are likely to require social care and council support much earlier in life than the national average, yet local authorities do not have a standard playbook or guidance on meeting those needs. Because of that, young adults with Down syndrome often end up living in facilities with people several decades older than they are, with no specialist care available.
Local authorities already have a duty to provide support and carry out assessments of need to help them to meet that obligation, and the Bill will provide much-needed guidance on best practices to local authorities who are delivering healthcare, social care, housing and education-related services, helping them to understand and deliver on their duties. That work will make public amenities more accessible and inclusive for the Down syndrome community, and help them to lead active, healthy and more independent lives. It will also raise awareness among the wider public, giving them insight into the facts of living with Down syndrome.
Multiple organisations have welcomed the steps the Government are taking. The chief executive of disability charity Mencap described this as
“a positive step towards ensuring that the needs of people with Down syndrome are met.”
I know the Government are consulting on how the proposed guidance will look so that we can learn from families, communities and organisations that know best. As my hon. Friend the Member for Eddisbury (Edward Timpson) said, this is something that people need to feel is being done by them, not to them. It is so important that they feel that this is something that they are consulted on and included in, and that is driven by them. I look forward to seeing the outcome of the consultation.
I hope that what we do here in the Bill can serve as a model for future work and discussion on helping those with other neurodevelopmental conditions, making society more accessible and fairer for everyone. I want to reference the comments made by my hon. Friend the Member for Newbury (Laura Farris), who described that very well. I come from the cyber-security sector, where we have lots of people with neurodiverse conditions excelling in jobs. There is no reason why that cannot happen in many more sectors of the economy. I really hope that we can use the Bill as a launchpad for expanding the number of conditions that have guidance that public authorities need to take into account.
People with Down syndrome deserve the same access and choice to education, public institutions and services as anyone else. They deserve the same opportunities to lead a healthy, fulfilled and prosperous life, and I am pleased to support the Bill, which will help to make that possible. I very much hope that we will see it enacted for World Down Syndrome Day on 21 March.
Mr Gagan Mohindra (South West Hertfordshire) (Con)
Like others, I start by congratulating my right hon. Friend the Member for North Somerset (Dr Fox) on his important work in bringing the Bill to the House and on reaching Third Reading. Like my hon. Friends the Members for Eddisbury (Edward Timpson) and for North Devon (Selaine Saxby), we all know individuals with Down syndrome. My experience is similar to that of my hon. Friend the Member for Eddisbury: when I was growing up, living in the house next door was a young lad by the name of Mark, who was the great love of his parents, Tony and Carol. It just so happened that he had this condition, Down syndrome, but that was not a barrier to the fulfilment of his life chances. Unfortunately both Tony and Carol have since passed away, but I am aware that Mark is leading a very full life. He is in work, and I believe he has his own individual accommodation, although he may require support and has a large network around him.
Our role, as legislators, is to ensure that people are able to achieve their full potential, and also to strive to give them the confidence to be ambitious. We who have been brought up in this country are very fortunate, in that the barriers to success are very limited. As a second-generation immigrant, I still pinch myself to make sure that I really am sitting on the green Benches in the House of Commons.
My previous experience as chairman of the board of governors of a further education college, and also as a governor on the board of a school for young people with autism, has shown me directly that when we do things right, we do them really right. That means being able to say to people, whatever their status or condition, “Be good, be great, and be a real world leader.”
Ruth Edwards
My hon. Friend is advancing an excellent argument. Can he outline some of his experience of best practice on the board of governors, and of what works and is successful?
Mr Mohindra
That returns me to my hon. Friend’s own earlier comment. The skills required in certain industries may not necessarily be academic. I suffer from dyslexia and have always regarded that as a superpower, although I am sure that if I had been diagnosed at an earlier age, others might have regarded it as a disability. The ability to think differently, to be a disruptor and to question the status quo, which conditions of this type may typically entail, benefits us as a society, and—here I allude to the previous role of my right hon. Friend the Member for North Somerset in defence—it makes our country even more secure than it might otherwise have been.
My right hon. Friend is an astute and successful legislator, and I am personally reassured that his Bill will have a lasting impact, but as others have said, this is the start of a process and not the end. Today we are focusing on Down syndrome, but I think it would be easy to replicate this model for the purpose of other conditions. I believe that these measures should be adopted as soon as possible, and I look forward to the fulfilment of the ambition of my right hon. Friend to complete the Bill’s passage before World Down Syndrome Day in March. I hope that the Government can provide us with some confidence that that will be the case.
The role of politicians at whatever level, whether in local or in national government, frequently involves signposting. The provision of a named individual in the integrated care system will be a game changer for the families and loved ones who may not understand the bureaucracy of whatever public service they are having to deal with. The ability of a Member of Parliament to direct a constituent to a named individual with an email or other correspondence address can only help the system and make it smoother. Our role as politicians is to reduce the barrier, to make life as easy as possible for our constituents. The Government have a proud history in this regard, given the work we have done to date. We spent £2.6 billion over the 2021 spending review period on new school places for children with special educational needs and disabilities in England, and will more than triple the current capital funding levels to over £900 million by 2024-25.
I was not going to mention this, but I will, because I think it important. I read an article in the media today about a lady called Beth Matthews. She is a young lady of 22 who has achieved in her life: her story is important because she is now a model and she also happens to have Down syndrome. For me, that is an irrelevance, but people feel the need to show her as a leading light. Similarly, there is Tommy Jessop, an actor in “Line of Duty”. It is good that we normalise people with a condition, whether hidden or obvious. I look forward to the day when they are getting named not for their disabilities but for their ability and the fact that they are a master of their art.
Ruth Edwards
Does my hon. Friend agree that it is important to have role models from neurodiverse conditions in all areas of life, and that that will encourage others to believe they can also fulfil their ambitions and dreams?
Mr Mohindra
Absolutely; my hon. Friend is on a roll with her interventions and I look forward to more of them.
When I was growing up—I am sure others will have had a similar experience—I always looked at the TV screen, the media or the newspapers and asked where the people of my ilk had got to and what they had achieved. It can only be a good thing for people to be able to see others who look or sound the same as them being world leaders or industry leaders or social activists—people who change others’ lives.
Locally to me, I want to give a shout out to DS Achieve and its teamwork across Hertfordshire. I did a bit of research—unfortunately for my right hon. Friend the Member for North Somerset I was unable to be involved in previous iterations of this Bill—and reading its website and understanding what it is doing is reassuring: it is about people achieving their potential and not being regarded as just having a disability. There is lots of work going on—my right hon. Friend commented earlier about the expected lifespan now associated with this condition, which is to be applauded—but we need to make sure that we consider not just living but quality of life. This Bill goes hand in glove with that aim, ensuring a safety net of local councils and communities so that additional support is in place if individuals feel they need it. Others have spoken about the fact that people’s needs are different: different individuals will need support at different times in their life, and not all the time, and being able to dip in and out knowing there is a named person they can go to as a one-stop shop for support is a smart idea, so I applaud my right hon. Friend for his foresight.
Edward Timpson
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 the Member for North Somerset (Dr Fox) said in his opening speech.
Mr Mohindra
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 the Member for Harlow (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.
Siobhan Baillie (Stroud) (Con)
It is a pleasure to speak in this debate. I congratulate my right hon. Friend the Member for North Somerset (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 the Member for Chichester (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—
Mr Mohindra
Let me give my colleague a brief respite. I know that she is a massive fan of the Bill of my right hon. Friend the Member for North Somerset (Dr Fox) and I look to hearing further words from her.
Siobhan Baillie
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—
Mr Mohindra
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?
Siobhan Baillie
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.
Ruth Edwards
My hon. Friend is giving an incredibly powerful account of her personal experience. I know that she works with many parents and people with Down syndrome. Does she think that support for new parents to come to terms with and understand the condition of their child has improved at all since her sister gave birth, or does she believe that we are still quite far off the mark?
Siobhan Baillie
That is a really important question. I think there have been improvements—my right hon. Friend the Member for North Somerset will attest to that—but there is still a lack of understanding and education. We have a real issue with people feeling that they need to have a termination when they are told about Down syndrome. There is a big campaign on not screening out children with Down syndrome, because they live very fulfilled lives and bring great joy to so many people. Education for all is really important.
Jonathan Gullis (Stoke-on-Trent North) (Con)
Let me quickly add my support for the Bill introduced by my right hon. Friend the Member for North Somerset (Dr Fox). On the point that my hon. Friend the Member for Stroud (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?
Siobhan Baillie
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.
Mr Mohindra
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?
Siobhan Baillie
Absolutely. That is so important. When I reel off this list, if I can get through it, Members will understand why it is so important.
I have seen my little sister battle for understanding about Down syndrome. I have seen her battle for the right to medical care for operations in a timely fashion. She has battled for education. She has battled for housing. She has battled to get landlords to take people with benefits. She has battled during the transition from Rhys being a child to an adult, and she is still doing that. She has battled to get the council to complete the required assessment. She has battled with the welfare system and disability living allowance appeals. She has battled with endless application forms and then had to re-do them because they have been lost by various authorities and had to start all over again. She has battled during covid. I know that a lot of families battled really fearing for their loved ones with Down syndrome, who are vulnerable, often with respiratory issues. Covid was thrown at all of us, but we found that parents were being ignored, or certainly felt they were being ignored, and not prioritised for vaccinations. The whole family was not being prioritised for vaccinations to protect the people with Down syndrome in their homes.
Edward Timpson
I think all of us are very moved by what my hon. Friend has had to say. Does she agree that her point about the battles she described demonstrates how important it is that, as the Government develop the guidance—I know my hon. Friend the Minister will very much have regard to this point—they involve the experiences, views, opinions and, I suspect, recommendations of those who have Down syndrome, or their parents, carers and supporters, so that they form the best possible guidance to deliver the right type of support at the right time and in the right way? That might then mean that those battles are much reduced and hopefully eradicated in future?
Siobhan Baillie
I thank my hon. Friend for his contribution not just in that intervention, but in his speech. I loved the Shakin’ Stevens stories. I defer to his expertise as a former children’s Minister. That is why the Bill will do so much good. Even the fact that we are having this long debate today with so many colleagues is incredibly moving. I am pleased to see that the Minister is as equally moved as me and that it is not just me with the tissues on these Benches.
These problems have existed under multiple Governments, so parties of all political colours should hang our heads but also want to see improvements. We all know, from our surgeries and inboxes, that parents of disabled children who have to come to see their MP are often completely exhausted. They are exhausted by the fights to get things for their children that they know they should already have or have seen other children have. They also know that they have no choice but to continue fighting. I know that MPs of all political colours try to help, but we have to get better at getting the legislation and the policy right so they do not get to that stage.
The Government are trying really hard to make improvements to legislation and to the system and the practicalities for people with disabilities. The Minister with responsibility for disability, the Minister of State, Department for Work and Pensions, my hon. Friend the Member for Norwich North (Chloe Smith), is absolutely excellent and I have real confidence in her ability and commitment to secure change.
As part of my small role in trying to push through those changes, I sit on the Work and Pensions Committee, and we have been doing an inquiry into things such as personal independence payments. During the inquiry, we heard from an excellent representative from the Down’s Syndrome Association. She gave a few examples of things we can change that directly impact people with Down syndrome. She explained that it is usually the parents making welfare and disability applications.
We have heard today from a number of hon. Members that, thankfully, those with Down syndrome are living much longer. Their life expectancy is no longer 30 years, but 60 years. That means that their parents are also significantly older, and we must bear that in mind. The constant drive for digital-only application is welcome in many respects and will mean there is a record, so hopefully we will not have the constant losing of paperwork that many families have to deal with. However, there are many elderly families and elderly parents who cannot cope with that, and we must build that into our systems.
Separately, there is a new in-person assessment approach to PIP, which can throw up some interesting results—unintended, in some cases. Where previously a family could sit down and do a written submission about what they needed and what they wanted changed in their PIP, doing an in-person assessment is very reliant on the person with Down syndrome.
My nephew Rhys’s favourite word is yes, because he gets a positive response to it. If someone says to him, “Do you play for Reading Royals?”, he will say yes. “Do you run for a bus?” He will say yes. One thing that my sister said made her nearly jump up and down was something like, “Do you have your own life partner or girlfriend?” He was saying, “Oh yes, oh yes.” She said, “No, no, no! He absolutely doesn’t.” We must bear that in mind when we create those policies and programmes, because it will not always work for everybody.
I welcome all the focus on and learning about people with Down syndrome today. I am still learning—I think we all still need to learn from people with Down syndrome and listen to them.
Ruth Edwards
I hope Madam Deputy Speaker will forgive me, given the circumstances, but I have just been interrupted by a text message from my constituent Matt Barney, a hardworking councillor in Leake and Ruddington. He tells me that his cousin, Heidi Carter, is with us today in the Public Gallery. She has Down syndrome and campaigns to reduce the age limit at which abortion of babies with Down syndrome is permitted. I wanted to take this opportunity to thank her for all her work and to welcome her here.
Siobhan Baillie
I am grateful for that intervention. I am thrilled—I have seen you listening intently, and it is wonderful to have you here today, Heidi.
I will draw to a close, but I believe we must all learn from people with Down syndrome. We will genuinely be a better society for having done so. I commend my right hon. Friend the Member for North Somerset and I thank charities such as the Down’s Syndrome Association—there are many charities that I should have had a big list of, and I apologise that I do not. I also love the Down Syndrome Swimming GB Twitter and Instagram accounts, and enjoy following them.
I thank the Government for listening and taking action. I look forward to seeing this Bill progress to Royal Assent.
Jo Gideon (Stoke-on-Trent Central) (Con)
We have had some amazing contributions today. First, I obviously thank my right hon. Friend the Member for North Somerset (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.
Mr Mohindra
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.
Jo Gideon
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.
Dr Fox
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.
Jo Gideon
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.
Brendan Clarke-Smith (Bassetlaw) (Con)
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?
Edward Timpson
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?
Jo Gideon
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.
Jonathan Gullis
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 the Member for North Somerset (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?
Jo Gideon
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.
Lia Nici (Great Grimsby) (Con)
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.
Jo Gideon
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.
Lia Nici
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?
Stuart Anderson (Wolverhampton South West) (Con)
I thank my right hon. Friend the Member for North Somerset (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.
Craig Williams
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 the Member for North Somerset (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?
Stuart Anderson
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.
Jonathan Gullis
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.
Stuart Anderson
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.
Lia Nici (Great Grimsby) (Con)
I congratulate my right hon. Friend the Member for North Somerset (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.
Jonathan Gullis
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?
Lia Nici
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.
Brendan Clarke-Smith
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?
Lia Nici
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.
Feryal Clark (Enfield North) (Lab)
I pay tribute to the right hon. Member for North Somerset (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 the hon. Member for Stroud (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.
The Minister for Care and Mental Health (Gillian Keegan)
I start by congratulating my right hon. Friend the Member for North Somerset (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 Member’s 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 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—I know she is watching me now—and my brother Marcus 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.
David Duguid (Banff and Buchan) (Con)
I congratulate my right hon. Friend the Member for North Somerset (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.
Gillian Keegan
My hon. Friend makes a very good point, which has been raised by my hon. Friend the Member for Stourbridge (Suzanne Webb) and my right hon. Friend the Member for Scarborough and Whitby (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.
Lia Nici
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?
Gillian Keegan
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.
Dr Fox
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 the Member for North Devon (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 the Member for Chichester (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.
Madam Deputy Speaker (Dame Eleanor Laing)
I am delighted to say that the Ayes have it.
Down Syndrome Bill
Monday 7th February 2022
(2 years, 10 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Down Syndrome Bill
Friday 18th March 2022
(2 years, 9 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Baroness Hollins (CB)
My Lords, I thank Mencap, Learning Disability England, the Down’s Syndrome Association and the National Down Syndrome Policy Group, among others, for their engagement with me in discussion about this Bill, including many who identify as having Down’s syndrome, their families and friends. I welcome those who have come in person to listen today, including the right honourable Member, Dr Liam Fox MP, who drafted the Bill so skilfully and steered it through the other place.
Like Dr Fox, I began my medical career as a GP, but I then went on to become a psychiatrist. I declare an interest: my adult son has a learning disability and he has many friends who have Down’s syndrome. I remind the House that most of my medical career as a psychiatrist involved my working directly with people with learning disabilities, including people of all ages with Down’s syndrome. I sometimes say that the most important thing I have ever done is to keep asking the question, “What about people with learning disabilities?” The thing is, unless you know somebody with a learning disability, it probably would not occur to you to ask that question. It is so hard to keep this community of people in mind. We saw it during the pandemic on our TV screens and in debate in Parliament. Care was synonymous with care homes for older people. The protection of people with a learning disability living in the community and of people with Down’s syndrome, who were eventually shown to be in very highest risk category for Covid-19, were largely overlooked.
A few questions and challenges have been raised about the Down Syndrome Bill, and it is important that they are aired. However, I also want to instil a spirit of hope in our debate today. My mentor, Professor Joan Bicknell, who sadly died a few years ago, taught me the art of holding in mind where we want to get to. I will respond to some of the concerns that have been brought to my attention and will consider them in the context of how children and adults with Down’s syndrome, and other people with learning disabilities, are currently living.
The Down Syndrome Bill has passed all its stages in the other place and I am very pleased that I was asked to help steer it through this House. It will require the Government to publish guidance on the specific needs of people with Down’s syndrome and how to meet them, and indeed to lay the guidance before Parliament. The relevant public authorities providing health, education and social care would then have to give due regard to this guidance in carrying out their functions under existing legislation, including the Care Act 2014 and Equality Act 2010. The Bill focuses on those with Down’s syndrome as one of the most diagnosed chromosomal disorders associated with a learning disability in England. There are over 40,000 people living with Down’s syndrome, most if not all of whom have some degree of learning disability.
Some are concerned that naming a Bill after a chromosomal condition is taking things back a few decades to a time when the medical model predominated, and that a diagnosis of Down’s syndrome on its own does not tell us anything about the extent of a person’s learning disability or other associated conditions that an individual might experience. A diagnosis is important to parents, who want to know why this child is different from the one they were expecting—and, for different reasons, a diagnosis is important to health and care professionals. Of course, it is important that any diagnosis does not define the person.
Implementation of the guidance must focus on the people behind the diagnosis, but a diagnosis does provide a framework to understand the common health needs associated with a specific disorder. It is important for health and care professionals supporting people to know and recognise the co-morbid health problems that are either specifically associated with or occur more frequently in people with Down’s syndrome. These include cataracts, hearing loss, obstructive sleep apnoea, low thyroid function, increased risk of leukaemia, congenital heart defects and early Alzheimer’s disease. When I was a young doctor, I remember children with congenital heart defects who were not treated because they had Down’s syndrome; a failure to intervene reduced their life expectancy and, often, their quality of life. A friend of my son had a heart attack and died before Christmas aged just 41—such a loss.
When there is a recognisable characteristic, such as the facial features that make Down’s syndrome recognisable, two problems may occur. The first is that any behavioural changes or health complaints may simply be attributed to the already identified condition. There is the tummy ache caused by a peptic ulcer that is blamed on Down’s syndrome rather than being investigated—this is called “diagnostic overshadowing”. The second is that people with Down’s syndrome are stereotyped as being always happy, docile, eternal children and so on. As Caroline Boudet put it in the Huffington Post in 2017:
“When you have Down syndrome, the first disability you have to face is the way people look at you. It’s based on received wisdom, society conveys misleading information about this extra chromosome and what it is supposed to cause. Each of us has prejudice in mind, this shows no ill-will but just a lack of knowledge”.
The majority of people with learning disabilities do not have a known cause; they and their families do not know the answer to the question “Why?”, just as in my son’s case. Their diagnosis is learning disability of unknown aetiology. Some people have a different genetic cause from Down’s syndrome, and some acquire a learning disability in the perinatal period. Their learning disability may not be recognised as quickly as that of people with Down’s syndrome; it may be their speech or behaviour that, as it were, gives them away, however hard they try to mask the differences to be accepted for who they are.
Let us look at another challenge: that a Bill named after a condition that can be diagnosed prenatally and which could be eliminated, as it reportedly has been in Iceland, means that the Bill is not needed, and may present a challenge to women’s reproductive rights. But whatever noble Lords think about abortion, some of the 40,000 people currently diagnosed with Down’s syndrome will be around for 70 or more years. Life expectancy is getting longer. Even if no more babies were born with Down’s syndrome, every one of those 40,000 deserves a better deal than they are getting now. The Bill is simply about helping those born with Down’s syndrome to have their lives valued the same as those born without it, and to have their strengths acknowledged and their difficulties supported through an improved understanding of how Down’s syndrome can affect people and families.
The timing of this Bill complements proposals in other pieces of legislation currently being debated within Parliament. I welcome the acceptance by the Minister during debate in the other place of having a named person within each integrated care board to be accountable for the implementation of the guidance on the Down Syndrome Act. Her Majesty’s Government had already pledged in both the NHS Long Term Plan and the autism strategy that all integrated care boards will focus on autism and learning disabilities at the highest level; for example, by having a named executive lead for autism and learning disability. Just this week, the Minister in your Lordships’ House, the noble Baroness, Lady Penn, reconfirmed this commitment by saying,
“I confirm our intention that all integrated care boards should have a named learning disability and autism lead and that NHS England proposes to issue statutory guidance on this matter to assist integrated care boards. The Government are supportive of this approach and believe that learning disability and autism leads on every ICB would act as a voice for those with a learning disability and autism in commissioning decisions.”—[Official Report, 16/3/22; col. 396.]
The Minister also accepted my amendment to the Health and Care Bill, which puts mandatory training about learning disability and autism on the statute book. It is all happening this month. I believe that the passage of the Down Syndrome Bill through the other place last month and Her Majesty’s Government’s support for the Bill has assisted in getting both of these through.
I would like this Bill to go further and to include all people with learning disabilities. However, previous attempts to introduce Private Members’ Bills on learning disability have been unsuccessful, including the LB Bill and my own Learning Disabilities (Review of Services) Bill, which aimed to make provision for the Secretary of State to undertake a public consultation on the provision of comprehensive and integrated services for adults with learning disabilities. In his speech in Committee in the Commons on 26 January, Dr Liam Fox highlighted that, given the logistical difficulties in passing a Private Member’s Bill, a clear focus on one condition was needed to improve the chance of this legislation being passed. Supporting the Down Syndrome Bill is a step in the right direction and something that we can build on. In my view, it is an imperfect but pragmatic way forward and a good model for a PMB, and I believe that, if the Bill is welcomed in this House, it will indeed pass.
The Bill’s supporters expect it to set a precedent that will ultimately benefit the healthcare and support of everyone with a learning disability, not only those with Down’s syndrome. Dr Fox sees it as a bridgehead to open the door to better care and support for the whole community, but some in the wider learning disability community are worried that people with Down’s syndrome will get preferential treatment and that people with other diagnoses, despite having similar health and care needs, will be left even further behind. I ask for the noble Lord’s assurance that there will be transparency in the Bill’s implementation, specifically to ensure that resources allocated to support those with Down’s syndrome are not taken away from those currently supporting other people with learning disabilities.
We all know the financial pressures being experienced within adult social care. Many parents say the stress they experience is not about having somebody with a learning disability or with Down’s syndrome in the family; it is the constant battle with the authorities, whether over EHCPs, respite or something else. My current battle for my son is the cost of sleep-ins to sustain his independence.
It seems that it may be time for a new learning disability strategy, like the Valuing People White Paper I contributed to, with so many others, in 2001: something to tie together all the various pieces of ongoing work, including the soon-to-be-published Building the Right Support action plan, and in the light of the new integrated care systems, as well as the anticipated social care and Mental Health Act reforms. A new, overarching strategy could build on the provisions and benefits of the Bill for the wider learning disability community. I hope the Minister will be open to further discussions about the development of such a unifying strategy. Clarifying these concerns will ensure that the Bill is successful in its goal of improving the quality of life and health of people with Down’s syndrome, to raise awareness and foster inclusivity. There is such enthusiasm to get started on developing the guidance—it feels like the time is right.
In a spirit of hope, I agree with Dr Fox, who said,
“it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to”—[Official Report, Commons, Down Syndrome Bill Committee, 26/1/22; col. 5.]
people with similar needs. As awareness of the care and support that people need increases, I hope more resources will be allocated. I beg to move.
The Deputy Speaker (Lord Faulkner of Worcester) (Lab)
I call the noble Baroness, Lady Stowell.
Baroness Stowell of Beeston (Con)
My Lords, I am sorry—my speakers’ list has me at the end, but I am happy to speak now. I am ready, if noble Lords are.
I say first how impressive the noble Baroness, Lady Hollins, was in introducing the Bill today. I cannot possibly do justice to this matter, particularly following her, but I will try because I support the Bill and I want to make just a short contribution. I have no direct experience of living with, or even being close friends with someone who has Down’s syndrome, but of course I have huge respect for the battles they encounter with officialdom—indeed, for all parents who have children with learning disabilities and how they have to navigate bureaucracy.
It is hard to explain, therefore, my particular admiration for people with Down’s syndrome. It may be something special about them that elicits a smile and fondness among all of us. Certainly my connection is very tangential, and it is this: my mum had a younger brother called Stuart, who was born in 1945 with Down’s syndrome. It was not called that then, but that is what he had. He also had lots of health complications and did not live much beyond a year or 18 months. Because he was born into a family of eight other children and they were desperately poor, my nana, who was a widow at the time, considered Stuart’s passing a blessing and she encouraged the rest of the family to accept that and move on, but my mum has never forgotten him, and she has always made sure that I know that he was one of her seven brothers.
Thankfully, the world is a different place. Not only can people in situations like that of my nana rely on support not available in the past, but people with Down’s syndrome live longer and we are now seeing their potential to achieve and succeed in lots of different arenas. That brings me back to this Private Member’s Bill. I am delighted to support my right honourable friend in the other place in this endeavour. I have known Dr Liam Fox for 30 years and I know that getting the Bill as far as this stage, with unanimous support in the other place, including that of the Government, is a result of him using all his professional and political skills—and probably a dose of impish charm along the way.
What is critical about the Bill for me is that it will inform a new strategic approach to supporting people with Down’s syndrome before we encounter the situation that my nana could not have conceived of 80 years ago: a person with Down’s syndrome can not only survive and thrive, but they are living longer and, as we have already heard from the noble Baroness, Lady Hollins, are now outliving their parents. It is vital that the future we anticipate now for people with Down’s syndrome is a positive one, so I commend the noble Baroness for all that she does in the field of health and support for people with disabilities. I support her in seeing this Bill through your Lordships’ House.
Lord Touhig (Lab)
My Lords, when opening Second Reading in the other place, Dr Liam Fox said that the first question that people have tended to ask about this Private Member’s Bill is “Why?” Why this issue, and why now? He gave three key reasons. First, he said that there is the challenge faced by those of our fellow citizens who have Down’s syndrome and their families. The second reason concerned the intellectual development of a person with Down’s syndrome—an area, he said, where public perception tends to be inaccurate. Thirdly, he said the Bill was timely as the life expectancy of a person with Down’s syndrome is now perhaps 58 years, compared with just 13 years some time ago.
It is more than 50 years since I first became aware of the challenges facing a person with Down’s syndrome and their family. We had just moved house and one of our neighbours had a son, David, with Down’s syndrome. We became friends, and in the next few months my late wife, Jennifer, became involved as a volunteer member of the local Mencap group. She helped to organise weekly gatherings of parents and children at the Glengariff day centre near our home. At first, she thought these evenings were just an opportunity for parents to have a cup of tea and a gossip while she and others organised events for the children; but she soon discovered that, for the parents, this was a time to share experiences and problems and give mutual support, which was otherwise lacking—a much-needed moment away from what appeared to be the pressure they lived with trying to raise a child with Down’s syndrome. She would often tell me about the challenges this or that parent had in gaining education support, welfare support and, yes, understanding and tolerance from others, including other family members and neighbours.
I know friends who became frustrated having to justify seeking support for their son with Down’s syndrome. They had to wait until he was seven to get him statemented. I discovered even more when, as a local councillor, I took up cases of parents with these problems. I would go into County Hall only to be told, “Sorry, Councillor, we can’t do anything; he”—or she—“falls through the net.” But who created the net? We did—we local councils created them, we the Government did, and we in Parliament had a hand in it too.
Many of the challenges that parents faced 50 years ago, when I first became aware of these matters, remain today. My wife went on to help set up a local Gateway club, visiting sixth forms recruiting youngsters to join in the support. It was at Gateway that I met Pat and her mother and father. Pat was a bright and cheerful girl, her parents doted on her, and she was always immaculately dressed and turned out. But when her father was taken seriously ill and her mother had problems managing, she went into local authority residential care. What a mistake. We met Pat wandering alone in Cwmbran town centre looking lost and dishevelled. Pat did not know the difference between 5p and £5, yet she was left without care and support. We were shocked but, thankfully, within a week her father had recovered, and she was back at home. But the experience of what we witnessed remained with us. The system—in this case, the local council—had let a vulnerable person down. She, again, had fallen through the net.
It was no better with care in the community. Cathy, a friend’s daughter with Down’s syndrome, was encouraged to experience independent living. She was placed in a house with two elderly men—both had dementia. One person came in the morning to make sure there was some breakfast; a second person came in the middle of the day to make sure there was a midday meal; and a third person came in the evening to see there was an evening meal. That was not care in the community; that was neglect in the community. Cathy was rescued—and I believe that, rescued—by her family within a week. Again, the system had failed a vulnerable person.
Several years later—it was during the Islwyn by-election—I was knocking on doors, and I came across a family. A family of four young women who had Down’s syndrome and they lived together as a family with a house mother. Now, that is real care in the community; that is doing it the right way.
Liam Fox’s second reason concerned perception and, having spent 27 years working in newspapers and publishing, I can tell you that in my experience perception is more real than fact in what most people believe to be the case than what actually is the case. The wrong perception about Down’s syndrome can also feed ignorance, prejudice and stupidity.
I found that was the case, even with the National Health Service. Some years ago, I served as chair of the All-Party Parliamentary Group on Down Syndrome. I listened in shock to a mother who related her experience of ignorance. She was at the bedside of her young son who was recovering post-op from minor heart surgery. The child appeared distressed, and she became alarmed, and she called the nurse, and the nurse came and looked and told her, “Don’t worry, dear. He is Downs, and they do not feel pain.” Do not feel pain!
Our committee then went on to take further evidence from a young couple. The wife had just given birth to a child with Down’s syndrome, and they were not aware that this was going to happen so they were coming to terms and trying to work out how they would come together and work as a family, and in breezed a doctor. When they spoke about their concerns, and said they were not certain what to do, the doctor told them not to worry, to leave that one here and go home and have another one—ignorance, prejudice and sheer bloody stupidity, all rolled into one.
Finally, Liam Fox’s third reason for introducing this Bill was that it was timely and necessary, pointing out that, in his lifetime, life expectancy for people with Down’s syndrome had increased from 13 years to 58. Timely is right—right in that, no matter how long or how short out lifespan, all have the right to quality of life. Who in this Chamber would deny that? We want it for ourselves—we do. Do we not want it for our children? Of course, we do. This Bill is another step, another building-block, in ensuring a person with Down’s syndrome has just that: quality of life, a life lived to the full in dignity and respect, respect for their human rights. The human rights of a person with Down’s syndrome are no less important than yours or mine. Their lives deserve to be lived, respected, honoured, defended and yes, indeed, cherished by all of us.
Baroness Jolly (LD)
My Lords, I support the noble Baroness, Lady Hollins, and all that she has said today and, indeed, all of her work. I should be brief—only a few minutes—but the alternative, more in-depth look at this would take rather longer than the powers that be would allow. I would like to thank Dr Fox for the time he spent in the briefing, which was very helpful.
In the standard way, I have no interests to declare. But in a rather sort of non-Parliament way, I have two interests that have informed the way I think about this area and this debate. Like many others, when I was much younger, I had contact with a family member—my cousin, Daniel—who had Down’s syndrome. Like many people with Down’s syndrome, he sadly died as a child when he was six, leaving my uncle and aunt totally bereft. But I can certainly remember him as a happy, cheerful child who is very much missed by the family.
Secondly, for three years I was chair of one of England’s larger providers of services for people with a learning disability. There, I began to understand the issues about the care of an adult with Down’s syndrome and the many areas to be considered in their care. Although not interests in the parliamentary way, these two points have coloured what I want to say about this Private Member’s Bill.
This, of course, in the main is an excellent Bill—clear, concise and with the main bases covered. Thinking about the relevant authorities, we should consider the services delivered by the Department of Health and Social Care, the DfE and the Ministry of Housing, Communities and Local Government—which now goes under the somewhat snappier title of the Department for Levelling Up, Housing and Communities.
I wonder if the Minister could tell the House what areas he thinks the Department of Health and Social Care would have to augment, were this Bill to be passed? Would the Minister tell the House what conversations he has had with officials about this Private Member’s Bill? What changes would need to be made in the unlikely event that it finds its way on to the statute book? We all know it will not, but for the 40,000 people who have Down’s syndrome and their families and carers, could the Minister tell me when was the last “in the round” look that the department made of services for and care of people with Down’s syndrome? When did that last take place? Who is responsible in Whitehall for ensuring they are appropriate? Is Down’s syndrome treated separately from learning disability, or are decisions made about those with learning disabilities taken as all right for those with Down’s syndrome?
One of the things that my time chairing a learning disability provider organisation taught me was that those we supported really valued being involved in decision-making. I discovered that meeting the needs of someone with Down’s syndrome was best done by involving the individuals in the decisions being made about them, along with parents and family. The Bill is silent in its guidance about involving the person with Down’s syndrome in decisions about how they live, with whom and where. We often fail to do this and, were this Bill ever to reach Committee, I would like to lay an amendment which would ensure that people with Down’s syndrome—or any of the other learning disabilities—could say, with their hand on their heart, that “No decision is ever made about me without me.” We would not fail to involve people with a physical disability in legislation relating to them. The Secretary of State should make a provision to involve people with Down’s syndrome—or any other learning disability—in any guidance written by the department.
Baroness Bennett of Manor Castle (GP)
My Lords, I must begin with a tribute to the noble Baroness, Lady Hollins, who works so hard for people with learning disabilities and other disabilities in your Lordships’ House, as I see in person very often, and I was privileged to see recently in a late-night—or possibly early-morning—stroll up Whitehall during the Health and Care Bill to get some more information one-to-one.
The right honourable Liam Fox—I note he is listening to our debate today—said of this Bill in the other place:
“it is about people who deserve the same ability to demand the best health, education and care as the rest of our society.”—[Official Report, Commons, 26/11/21; col. 579]
Of course, nobody could disagree with that aim, but it is true for people with other chromosomal abnormalities, people with learning disabilities and many other people with special needs in our society. The fact is that our society is profoundly discriminatory. People are disabled by the barriers society puts in their way. Physical barriers, as we have just heard from powerful testimony from the noble Lord, Lord Touhig, are attitudinal barriers which are frequently still, sadly, awful.
There are 1.5 million people with learning disabilities in the UK and about one in 50 babies are born with a chromosomal abnormality. As the noble Baroness, Lady Hollins, has often drawn the House’s attention to, men with a learning disability have a life expectancy of 66 years—14 years below that of the general population —and females 67 years, which is 17 years below the general population, reflecting some of that discrimination that I referred to.
It was not my intention to speak on this Bill—your Lordships’ House may know that I have rather a large number of Bills on my plate—but I received large numbers of representations from people concerned about it, which is what led me to be in your Lordships’ House today. Some of those concerns reflect what the noble Baroness, Lady Jolly, just said. When I looked into this, I was quite surprised that in a press release about the Bill, the Down’s Syndrome Association said that it had not been
“invited to be involved in the development”
of the legislation. That very much provoked me to think of the phrase that the noble Baroness, Lady Jolly, just used: nothing about us without us. If the noble Baroness is going to table an amendment along those lines, I would certainly be interested in supporting it.
The first concern that families and groups of parents with children and adults who have Down’s syndrome have come to me about is that the Bill will have no substantive effect on the rights and lived experience of people with Down’s syndrome and their families because the duties in it are narrowly drawn; demand very little of public bodies; crucially, attract no new funding; and provide no meaningful mechanisms for enforcement or redress.
There is a really serious concern that the Bill implies that a diagnosis predicts how a person’s needs should be best met, rather than people’s personal, individual and unique needs, characters, gifts, talents and aspirations, and the idea that it is possible to generalise about a highly diverse group of people based directly on diagnosis alone. The families have said to me that they are concerned that this approach risks reinforcing rather than overcoming prejudice and discrimination, while undermining decades of progress in moving towards personalised support across the fields of education, health and social care.
I note—the noble Baroness, Lady Hollins, addressed this in her introductory remarks—that it has been argued that the Bill offers a model for others to follow to address other conditions and people in other circumstances, but it is very hard to imagine that we could see a whole procession of Bills addressing people with different health needs and disabilities along this model. Surely it would be better to make sure that people’s needs as an individual, whatever diagnosis they might have, are addressed.
At this point, I should declare my position as vice-chair of the LGA and NALC. The crucial issue here, surely, is resources. I am aware that the Bill was put forward by the noble Baroness, Lady Hollins, but there are questions I would like to put to the Minister if the Government are backing it. How do we know that it will have the intended impact? How will it be enforced? We talked about ensuring that there was full consultation on the guidance, but what role might Parliament play in producing the guidance? Crucially, without further resources, how could public bodies conceivably implement this new guidance?
I come to one final area of concern, looking at the discussion of the Bill in the public realm and the way it has been discussed in the press and online, about what people advocating for it or pinning their hopes on it believe it is designed to achieve, particularly around issues concerning maternal health and reproductive rights. The Bill, of course, very directly addresses the needs of people with Down’s syndrome, which legally applies only to people who have been born and therefore does not relate to the needs of pregnant women who may have received an antenatal diagnosis but do not themselves have Down’s syndrome. So I ask either the Minister or the noble Baroness, Lady Hollins, to confirm that, in the Department of Health and Social Care, the intention of the Bill is not to plan to develop new guidance or amend any existing guidance concerning antenatal care and existing reproductive rights as a consequence—save as it may apply, of course, to the needs of women who have Down’s syndrome.
Lord Farmer (Con)
My Lords, I rise to support the Bill and congratulate my right honourable friend Dr Liam Fox, who is with us today, and the noble Baroness, Lady Hollins, on bringing it to this House. I also thank the Minister for his correspondence to me on this legislation, and I take this opportunity to congratulate him more widely on reaching the end of Report on the epic Health and Care Bill yesterday at 2.15 am, when I was with him. It was an early baptism of fire after entering this House, and a much prolonged one at that. The Bill and Front Bench teams, including my noble friends Lady Penn and Lord Howe, are also to be commended for their energy, stamina and courtesy—as, of course, are the Opposition Front Bench teams. It was a marathon.
I confess to mixed feelings about this Private Member’s Bill, despite its laudable aims, because with the mapping of the human genome, many other genetic disorders have come to light. Though not as common as Down’s syndrome, they are not incredibly rare “black swan” events in our population, although they can seem so to the individuals and families coping with them. As I understand it, the Bill seeks to educate the public particularly about the opportunities technology now avails individuals with Down’s syndrome to have a better and longer life than many realise is possible; to ensure that Down’s syndrome is properly considered in service provision across different sectors; and to plan for future impacts of longer life expectancy for people with this condition. All these aims are just as relevant to individuals with other genetic disorders, yet they can struggle additionally to those with Down’s syndrome because there is still so little public and clinical awareness of the ramifications of their chromosomal abnormalities, hence my ambivalence. What guarantees can my noble friend the Minister provide that the Bill will not widen this inequality further?
I will illustrate the complexity of what these genetic conditions can entail by focusing on the second most prevalent after Down’s: 22q11 syndrome, the APPG for which I am a vice-chair of. But there are of course others, such as Prader-Willi syndrome and Smith-Magenis, or 17p, syndrome. 22q syndrome is caused by a genetic deletion on the longer q portion of the 22nd chromosome, meaning a small part of genetic material is missing from the DNA in every cell of the body. It is the most common microdeletion syndrome in humans. In most cases, it occurs de novo in a child’s very early development, but it can be inherited. Doctors have struggled to diagnose it due to the very wide variety of symptoms and conditions which arise from the same missing genetic material. It was only relatively recently discovered to be the one root cause for multiple diagnoses, including DiGeorge syndrome and velocardiofacial syndrome.
22q manifests itself in nearly 200 different physical and mental health issues spanning the cognitive, endocrinological, behavioural, immunological, cranio-facial, sensory and cardiac. That can mean hearing and speech problems, facial abnormalities, scoliosis, calcium deficiency, eye problems, seizures and constipation, with poor development of various bodily “tubes”, as I will describe in a moment. Some 50% to 85% of those with 22q have congenital heart disease, 10% have cleft palate, 30% have kidney anomalies, 1% have severe immunodeficiency and 60% to 90% have psychiatric disorders.
One family whose baby was diagnosed within a year of his birth describe 22q as the Pandora’s box, because they were never sure what new medical nasty would emerge. He nearly died at five days old because the end of his bowel had not formed properly, and sepsis took hold when he could not void meconium. Thankfully he survived, but twice a day the exhausted parents had to wash out his bowel using tubes and suction; I will not dwell on that. After several months, he was admitted for an operation on his bowel, but the anaesthetist was concerned that his throat was as narrow as a newborn’s. Basically, it and his larynx had not formed properly either, which explained why he never cried but made slightly strangulated coughing noises.
Again, thankfully, he was admitted to Great Ormond Street Hospital, where they widened his throat and removed the laryngeal web which would have prevented him ever speaking. Although his parents had to travel a long way within the UK to get there, they met families who had come from other countries for the same operation, because Great Ormond Street is a centre of excellence. We cannot take such provision for granted. His heart and the vessels to and from it were also giving the many medics looking after this little boy cause for concern, and they decided to do some genetic testing. To cut a long story short, he was diagnosed with 22q.
He continues to risk becoming dangerously ill when there are colds about, due to his compromised respiratory system, so the pandemic was a tough time for his family, and he will probably always have to attend a special school because of cognitive delay. Facially he looks quite normal to the untrained eye, but his life and his parents’ experience have been anything but.
Every 22q child presents in a completely unique way, and many do not get diagnosed until much later in life because of the variability in severity. Hence one of the top asks from Max Appeal, a support group for parents with 22q children, is that 22q be part of the newborn heel-prick test. A 2017 study in the Journal of Clinical Immunology concluded that
“the clinical characteristics, diagnosis, management, and treatment of 22q11.2 Deletion Syndrome have been shown to meet the criteria for new-born screening programmes and support the need for earlier diagnosis.”
Far less prevalent conditions such as cystic fibrosis are included, but they, like Down’s syndrome, are in the mainstream of medical consciousness. Without screening it is very hard to determine prevalence accurately, although some studies estimate that one in 2,000 children are born with it, which would make it half as common as Down’s syndrome.
I mentioned my ambivalence, but my optimistic ambition for the Bill is what has been mentioned already: that it will provide an awakening for the Government and the public to this world of genetic disability. The medical establishment also has some catching up to do although, thanks to grass-roots pressure from organisations such as Max Appeal, significant progress has been made in treatment and raising awareness, which is of course what I am trying to do right now.
What guarantees can the Minister give that this Down Syndrome Bill will lead to a floor of provision for genetic disorders on which to build, not a ceiling on our aspirations for helping these unique and uniquely precious individuals and their families cope and indeed flourish despite the lifelong implications of immutable chromosomal disorders? In the meantime, I welcome the Bill and support its passage through the House.
Lord Wigley (PC)
My Lords, I wish to speak in support of the Bill. I thank the noble Baroness, Lady Hollins, for introducing it to the House in such a comprehensive manner and I thank Dr Liam Fox, of course, for having introduced it in the first place in the House of Commons and for steering it through to get this far.
I draw attention to my registered interest as a vice-president of Mencap, which very much welcomes the Bill and the powers that it gives to create new guidance to reinforce the provision of services at local level. Perhaps I should also mention that we lost two boys with severe learning disabilities, although not with Down’s syndrome—rather, they suffered from one of the mucopolysaccharide group of disorders. They died at the ages of 12 and 13. We too had to make the 500-mile round trip to Great Ormond Street on many occasions, and I pay tribute to the tremendous work that is still being done there.
I have spoken many times in the House about the level of health inequality suffered by people with a learning disability. A report by Bristol University in 2020 showed that, on average, men with a learning disability die 23 years younger than those without such a disability, and women die 27 years younger than their peers in the population as a whole. They die not because of the direct impact of their specific disability but from other conditions which their disability prevents being adequately addressed. I served as a member of a special inquiry into this some 15 years ago. All sorts of promises were made at that time about improving this appalling situation, but here we are in 2022, still unable to close the gap.
This basically comes down to ensuring that everyone, whatever their learning disabilities, can access the services they need. This is the crux of this short and straightforward Bill. It is not a Bill which imposes new rights and new support on people with learning disabilities; it is to ensure that these people actually get the services to which they are entitled and which they should be getting under existing legislative and executive provision. The fact that they are falling through the net and are not getting such support is the basis for putting forward this short piece of legislation.
The Bill requires the Secretary of State to issue guidance to a number of public authorities with regard to the additional steps which they should take to ensure that they are meeting the needs of people with Down’s syndrome. The public authorities who come under the provisions of the Bill are those related to the National Health Service, social care, housing, education and youth offending. By using the mechanism of guidance, the Bill latches on to a lever which Secretaries of State already have for driving forward the policy of their Government, but it extends the application into a specific sector.
The Bill applies to England only, and noble Lords may well ask why I am involved. It is for two reasons. First, every step forward which helps people in one part of these islands can be a catalyst for similar progress in other parts, as was the Wales plastic bag legislation. Secondly, if the Bill can help people with Down’s syndrome in England, why on earth should I not be supporting it?
The Bill has been criticised for addressing Down’s syndrome people specifically, when there are many other conditions generating learning disabilities which will not be covered. I would merely respond that it is better to get this provision rolled out now and to use it as a lever that may secure similar improvements for other groups of people with learning disabilities. Indeed, the ministerial guidance provided by the Bill may act as a trigger for other groups as well.
Others will argue that a small Bill such as this is a wasted opportunity for getting a major piece of legislation to support people with disabilities on to the statute book, and they usually point to Acts such as Alf Morris’s Chronically Sick and Disabled Persons Act 1970. Well, it is great if an MP can get the top slot in the ballot and then gets the support of a Government willing to provide the necessary money. I came across that problem in taking through the Disabled Persons Act 1981; it was modest and limited in its scope, but it opened the door to the Tom Clarke Act of 1986, and the momentum generated undoubtedly contributed to the public mood, which demanded the Disability Discrimination Act 1995. We should never disparage small steps, as they move us forward, even in a limited way, and they can pave the way for more ambitious legislation in due course. So I am delighted to support the Bill.
Baroness Uddin (Non-Afl)
My Lords, it is an honour to follow the noble Lord, Lord Wigley. His words echoed not only throughout the Chamber but throughout the country with mothers, families, and the individuals on whom I hope this legislation will impact.
I also support the Bill. It is a privilege to be able to take part in this debate where there is so much consensus across Parliament. I am grateful to the right honourable gentleman Dr Liam Fox in the other place and to the noble Baroness, Lady Hollins, who has long been a heroic champion of disability rights. I remain in awe of her continuous work.
I am blessed with a 43 year-old son who lives with autism and learning disabilities, and the words of the noble Lord, Lord Wigley, touched my heart. My family has long battled with serious challenges within services. If I spoke about the experiences 40 years ago I would still be wailing, as I wailed then, battling institutional discrimination against disability rights. We as a family long resisted my son being called mad, bad or handicapped, as once was acceptable, despite legislation being in place.
I also have a son who recently became an amputee—a traumatic and heartrending experience. I cannot really say that I have learned how best to describe the impact of his traumatic incapacitation and disability as yet. I agree with so many parents and activists who have taken time to write to remind me that language is very important, and that there are no hierarchies of disabilities or of the experiences of people who are born with different abilities. So many of our loved ones face a level of discrimination and struggle for equity and social justice, even with the basic rights of education, housing, employment and social care provision. Noble Lords have already spoken eloquently and described some of the discrepancies in services and provisions, so I will not go into that. Nevertheless, although we have mostly developed more respectable language, shortfalls remain the norm in all institutions. They should uphold the dignity and equality of people who live with disabilities.
As has been said, the Bill would require the Secretary of State to give guidance to relevant authorities to meet the appropriate needs of people with Down’s syndrome, have due regard to and require consultation with people with Down’s syndrome, and, more importantly, publish a report and lay it before Parliament. However, all that could be just rhetoric and written reports if the Government do not take it seriously and local authorities and all the health and social care institutions are not mandated to do so.
The Bill has rightly received positive responses from many organisations, with the aspiration that it will support provisions, including health, education, employment and care needs, for people with Down’s syndrome throughout their lives. It is expected to pave the way for more equitable services for people with Down’s syndrome, which may result in greater parity of services and care available to other people with disabilities who benefit from statutory care provision.
It would be remiss of me not to bring the House’s attention to the discussion on the Bill which has highlighted the worrying level of disparity experienced by people who live with disabilities. Regardless of the fact that many have achieved a high level of education, it appears to make no difference to their life chances, including access to employment. I know that; I am not just speaking from the reports and representations I have received. I have worked in the profession as a social worker and with families and small NGOs in my locality. I have direct experience, so these are not just words from reports; I am highlighting the experiences of many others who are unable to be in the House or the other place.
Only around 6% of people with learning disabilities are in employment so far; we have not achieved beyond that. We have a long way to go. The Down’s Syndrome Association, the National Down Syndrome Policy Group and Mencap are the experts and, while welcoming the legislation, they are rightly asking how the Government will address the worrisome statistics on outcomes for all people with disabilities with regard to education, employment and so forth. For example, how will the postcode lottery of statutory and voluntary-led services be addressed?
From my personal experience over 40 years, I know that mainstream schooling for children who need specialist support remains the purview of the most elite parents. Despite the fact that I sit in this House, I never had the privilege of being regarded as one of the elite who can advocate for my son, even all those years ago. Whenever I spoke, I was regarded as if I was so mentally challenged by the fact that I was an Asian woman and my firstborn was a child with learning disabilities that, somehow, that scarred my mental ability to fight for the justice that he as an individual deserved. So many people still say that that is the case, and that is something that all Members of your Lordships’ House and the other place should be concerned about. Given the many decades of inertia that have persisted in local health authorities—supposedly working in the best interests of the individual child—how will the legislation bind statutory services to their obligation to provide the necessary resources and funds?
I am pleased that Dr Liam Fox in the other place and the Down’s Syndrome Association have raised important and outstanding matters of the deepest significance for these debates, so that we can meaningfully impact the lives of people with Down’s syndrome. This legislation is indeed an important milestone, and I agree entirely with the noble Lord, Lord Wigley, when he asserts that it will be a small stepping-stone to much advancement on disability rights. We all hope that the Bill will enable more people with Down’s syndrome to live with dignity and respect.
As has been stated, the House should know that Mencap supports and welcomes the Bill. It feels it could be the foundation for legislation to support people with learning disability more widely and sees this as a defining moment to set up a bigger conversation that will, hopefully, lead to a cross-government learning disability strategy.
Alongside the Down’s Syndrome Association and the Down Syndrome Policy Group, the LGA is seeking urgent government assurances that they will complete their ongoing review of the special educational needs and disability system, setting out reforms and increasing mainstream inclusion, providing councils and schools with long-term certainty of funding to meet the needs of all children, and giving councils the power to hold education and health partners to account if their provision to identify and support children with SEND is inadequate. I hope the House will agree with the LGA; it has been more than a decade since the last strategy, Valuing People Now, was published. With all this good will in place, what plans are afoot to formulate a new national disability strategy?
Finally, in recognising that there are parents such as me from what is termed a minority group, although our children are ethnically British in every way, one report after another of late has finally conceded that there is discrimination and disparity across all institutional services for minority groups. In the experience of people with Down’s syndrome and their families, who are not a homogenous group, discrepancies have been highlighted by groups such as Include Me TOO, a member organisation that advocates on behalf of ethnic-minority families who care for loved ones who live with disability. The organisation feels totally excluded from all aspects of decision-making in the mainstream, and it is clear that many of the family members seeking the organisation’s support and advocacy continue to feel disadvantaged by their gender, race, ethnicity and faith while journeying through statutory and NGO services. That has left many scarred, with lifelong adverse impacts on their life chances, and negative outcomes for countless individuals and broken families. It has caused untold long-term physical and mental health damage for individuals with disability and impacted on their carers’ and loved ones’ well-being.
I ask just two quick questions. How will the diversity of people with Down’s syndrome and their families be recognised in the legislation and the guidance? How will the Government ensure that the voices of the individuals and NGOs that are consulted come from wide-ranging backgrounds and reflect adequately the needs of gender, race, cultural and faith aspects of people with Down’s syndrome? Will the Minister commit to leading a robust equality impact assessment before commencing the development of guidance to inform the process, and ensure that the consultation and guidance address people with Down’s Syndrome in all their diversity?
Baroness Neville-Jones (Con)
My Lords, I speak on this Bill because of my membership of the all-party group and my strong interest in genetic conditions. I have a godson now reaching maturity who has a genetically-based severe learning disability which is not Down’s, and whose parents have had to fight hard for the whole of his life for access to the provision of services, particularly social and educational, which the rest of us take for granted will be available to us as and when we need them.
As the noble Baroness, Lady Hollins, said in introducing the Bill, its aim is to improve the provision of services and bring to an end discrimination in practice against individuals with Down’s syndrome—of course, we know that it is not actually legal to discriminate; the issue is what happens in the real world. And who would not wish to see this happen? If you or your child has Down’s syndrome, the Bill offers real hope. However—I am afraid that there is a however—this prospect has given rise, not in this House, where I recognise that the Bill has received a warm welcome, but outside to divergent and worried views about the Bill’s merits and about the desirability of it reaching the statute book.
On the one hand, there are those who argue—if I might say so, I think that the noble Lord, Lord Wigley, represented this view—that, while the Bill is exclusively concerned with Down’s syndrome, it will in practice open the door to people with other genetic conditions getting better treatment than is currently the case. “Better to start somewhere than do nothing”, especially as, in a Private Members’ Bill, the scope has necessarily to be narrow. I do not dismiss any of these considerations, nor do I dismiss the argument, but in a hard world it does not offer any guarantees of success.
On the other hand—and I am afraid that this is where I tend to stand—there are those of us who see the great danger that this Bill, which uses the device of guidance which has to be followed, to give preference in the provision of services to those with Down’s syndrome, with the possible result—indeed, the likely result—of those with other, less well known but equally disabling genetic conditions being denied equality of access to provision and becoming worse off than before, because funding is limited and unlikely to increase in the foreseeable future. My noble friend Lord Farmer set out in detail, with eloquence that I cannot match, that this is not a tiny minority but an increasing number of people with other disabling genetic conditions, some of which are very severe indeed, who are not included in this Bill.
What are the consequences of one group, on the basis of a pretty traditional categorisation of diagnosis being favoured, being preferred, while a large number of others are left out of account? It could give rise not to the idea that this is just a door-opener but that this is discriminatory and divisive among a community of people who face the same challenges. That would be a pretty undesirable outcome, were that to occur, dividing people with genetic conditions between sheep and goats. I put it pretty starkly because we cannot hide from the realities of life, which is that there is not enough money. That is where, if some are preferred, others are likely to get less.
I search for possible ways forward. In Committee in the other place, the Minister said something to the effect that the Government recognise that people with genetic conditions other than Down’s syndrome experience problems similar to those with Down’s syndrome and will therefore consider the overlaps and linkages between such conditions and Down’s syndrome, through the consultation on the development of the guidance. Your Lordships can see where I am driving. Clearly, the wording of the guidance is crucial because it is a directive to those who implement it, and therefore what it says will be followed. I take a commitment to consult on the terms of that guidance seriously but, given the potentially dire consequences for those outside the zone of preference, such a commitment is not, by itself, enough to quell my doubts about the desirability of this Bill reaching the statute book. It promises a process but not an outcome.
The timetable is now short to decide the fate of this Bill, so I appeal to the Minister. I hope that when he speaks, my noble friend, who appears to be backing this Bill, can offer some comfort on the score of non-discrimination between genetic conditions, regarding access to funding, based on fair assessment of real needs. I do not often agree with the noble Baroness, Lady Bennett, but she was right on the money in that the issue is assessment of real needs; it is not between one category of diagnosis and another. I hope that the Government provide us with some way forward to guarantee non-discrimination. Will the Minister be willing to issue instructions, if necessary, to prevent discrimination between people with Down’s syndrome and those with other genetic conditions?
In 2022, this House cannot pass laws which we have reason to believe would have discriminatory effect. If we do, we can be sure that, after passage, our legislation will be challenged in the courts by an aggrieved party. I am sure we all agree that it would be best to avoid this. I look forward to hearing from my noble friend either now or, if he needs to consider the matter, before we are in Committee, on what the Government have in mind to avoid discrimination by category of genetic diagnosis and instead promote access to provision of services based on assessment of real needs.
Lord McDonald of Salford (CB)
My Lords, this has been a fascinating debate and I am grateful for the chance to contribute.
Most noble Lords who have spoken have supported the Bill. The noble Baroness, Lady Bennett of Manor Castle, and the noble Lord, Lord Farmer, wanted more. I understand that. I listened carefully to the noble Baroness, Lady Neville-Jones, but the fact that we cannot have everything should not mean that we have nothing at all; rather I am glad to add my voice to the chorus in favour of what the noble Lord, Lord Wigley, called “small steps”, for three main reasons.
First, this Bill can be transformative. Investing in children with Down’s syndrome is demonstrably worth while. I know this from my wife’s experience. For most of the last 18 years, Olivia has supported a girl with Down’s syndrome. Lizzy is a wonderful person, now a multiple medal-winning international swimmer, on the threshold of adulthood, with the prospect of a high degree of independence.
Secondly, this Bill is urgent. When we were children, a baby born with Down’s syndrome had an average life expectancy of less than 20 years. Now, a baby born with Down’s syndrome has an average life expectancy of nearly 60 years. This is the first generation of children with Down’s syndrome expected to outlive their parents. This new fact needs a new policy response.
Thirdly, the Bill could enhance the UK’s international reputation. Last week, President Zelensky told Parliament that Britain was a great nation. These days, soft power is a large part of Britain’s impact in the world. The Bill would blaze a necessary trail, as the first of its kind anywhere in the world; it will be an example that other countries will want to follow. The Bill deserves a Second Reading and, when it becomes law, it deserves to be funded.
Baroness Blower (Lab)
My Lords, I rise extremely briefly to add my support to the Bill and to acknowledge that the question of “nothing about us without us” is very significant.
I began teaching in 1973, and would never have found a child or young person with Down’s syndrome in a classroom in front of me, but things have changed and moved on significantly. When I told my daughter, who now teaches a year 4 class, that I would be in the House of Lords today to hear a debate on guidance about services for people with Down’s syndrome, she said, “That will be really exciting, and so necessary”. One of the things she said to me was, “There just aren’t sufficient representations of the vast range of people that there are in our society available to us to use in our classrooms”. She is a young person who definitely wanted to go into teaching because she felt that it was important to be in a classroom with a range of people with different conditions.
I listened carefully to the noble Baroness, Lady Stowell, and I share her concern that, at a time of constrained resources, there might be a tendency to say, “We have to do this; we don’t have to do that”. But I hope we are better than that. It is so important that we fund the services as they are assessed—that we fund for need, not because a particular person happens to have a particular diagnosis or condition. On that basis, even though this is a small step and there is a risk—unless we fund everything properly—that some people may feel there is privileged treatment, I wish the Bill well.
However, since some of the “relevant” bodies that appear here are school governing bodies, the providers of early years services and academy proprietors, I want to be absolutely sure that the Government will be very clear that all those institutions have a big responsibility to read, understand and follow the guidance. That is an education matter, rather than a medical one.
The Deputy Speaker (Lord Russell of Liverpool) (CB)
My Lords, the noble Baroness, Lady Brinton, is taking part remotely and I invite her to speak.
Baroness Brinton (LD) [V]
My Lords, I declare my interest as a vice-president of the Local Government Association. I thank the noble Baroness, Lady Hollins, and Dr Fox for their time in answering questions at yesterday’s helpful briefing, and the various people and groups who have written to me and other Peers. It was also a pleasure to support the amendments to the Health and Care Bill of the noble Baroness, Lady Hollins, on mandatory training for staff working with people with learning disabilities and autism. I am delighted that the Government agreed. I too pay credit to the noble Baroness, Lady Hollins, for her outstanding campaigning over many years for people with learning disabilities.
My Spanish nephew Alex, now in his late 30s, has Down’s syndrome. As a family we have seen this baby grow into a fine young man, hampered only by the perceptions of others. My sister has had to fight for his rights, be it for a Covid vaccine this year or for his medical needs over many years. She had to take on the education authorities because there was no integration at all in schools: “children like that” went to a special school that was, in reality, a hospital, with locked doors and staff in white coats. She won her campaign and he was the first child with Down’s syndrome to go to mainstream primary in Majorca. But the most important part of his story so far is that he is a fantastic sportsman. Twelve years ago he won a European championship in karate; he has also swum in national competitions, and I cannot tell you how proud we are of his achievements. Yet too many people do not see past the condition, nor understand that every person with Down’s syndrome is an individual and has differing needs.
Another Alex, the same age as our Alex, is the daughter of our very close friend. She went to primary school and Sunday school with our children, and now lives happily in a house near her mum, with support from carers. She is non-verbal and needs constant support when awake. She loves her house, her daily routine and her family. As with almost all people with Down’s syndrome and their families, it has not been easy, but for this Alex, it works.
So when I read this ambitious and laudable Bill, my first question was: how will this help people with Down’s syndrome and their families? Our role in the Lords is to make sure that legislation delivers the intention of a Bill and does not create unintended consequences. I share the concern of the noble Baroness, Lady Neville-Jones, that inadvertently this Bill will create a hierarchy of disability that risks doing harm to the rights of other disabled people, particularly people with learning disabilities, which may also be discriminatory.
By their very nature, the Bill and subsequent guidance will create a unique and separate focus on the needs of people with Down’s syndrome, as well as duties and rights that are exclusive to this group, which risks undermining the principles of equality and non-preferential access to resources across education, health and social care, and employment. There is also a danger that it may disadvantage individuals with other disabilities who do not have the same legal recourse if providers fail to abide by the guidance. Can the Minister tell me what work will be undertaken to ensure that the Bill does not disadvantage people with disabilities other than Down’s syndrome? If the Minister believes that no such work is required, what is the purpose of legislating to provide exclusive duties relating only to people with Down’s syndrome?
I am also concerned that the Bill lacks power to achieve its aims, which risks causing confusion among public bodies and people with Down’s syndrome and their families about their duties and their rights.
In common with people with learning disabilities generally, people with Down’s syndrome and their families face significant inequalities and discrimination in our society. The current framework of legislation that we have to address this includes the Care Act, the Children and Families Act, and the Equality Act. However, they have been systematically weakened by underfunding and by removing mechanisms through which people can secure redress.
Understandably, expectations have been raised very high by the Bill, yet I see evidence from the Minister that it and the resulting guidance have no power to address these deep-seated problems. For example, can he explain how it will ensure that people with Down’s syndrome can secure appropriate and adequate social care and that our classrooms include additional teaching assistants? The Bill does not say that. Can the Minister provide examples of the differences he believes that this Bill will make in the context of health, social care and education?
Dr Liam Fox commented that the Bill
“sets a precedent that can be followed later on in other areas.”
That has been commented on by noble Lords this morning. Will the Minister tell me whether it is the intention of the Bill to set a precedent where each diagnosis will require a new set of guidelines and, if so, what continued role the Government see for the existing legal duties which underpin disability equality? In Committee in the Commons, Gillian Keegan said at the Dispatch Box:
“We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance”.—[Official Report, Commons, 26/1/22; col. 8.]
I know that by giving one group rights when resources are scarce, others will not get them. I echo the question asked by the noble Lord, Lord Farmer: what happens to those who have other genetic conditions, or none, but have learning disabilities, who must rely on the good will of Ministers in the future, and to those with learning disabilities who may not fall into this category? Here in Watford, our CCG decided some years ago to close the children’s respite centre, Nascot Lawn, because in its view respite care was not statutory. Children eligible for respite care have multiple and profound needs, and personal care for them has to be delivered by nurses or by family members trained by hospitals. Twice the Nascot Lawn families won High Court judgments against the closure and the removal of that respite care and the lack of proper provision.
The CCG repeatedly said that its resources were scarce and it had to prioritise just statutory services. It closed in 2018, and these children and their families have struggled ever since to get the support they need. It did not matter that their EHCPs said that these children and families needed respite care; it was all about resource. At least one family could not manage to look after their child without that respite care: being on duty 24 hours a day and every night had taken its toll. Will other people with high levels of need but who are not people with Down’s syndrome move even further to the back of the queue?
There is also concern that the Bill and guidance risk undermining principles concerning person-centred assessment and support, embedded in law, whether in relation to support for children and families or support for adults, by elevating the condition and suggesting that this predicts needs. That is why I gave the illustration of our two people named Alex. This not only represents a regressive step politically, by advancing a medical model of disability and elevating diagnosis over individual needs; it will also create considerable legal and regulatory complexity for local councils, the NHS and schools at a time when they are already stretched in meeting statutory duties. Will the Minister recommit to the principles of person-centred rather than diagnosis-centred assessment and support and tell me what work will be undertaken to embed this person-centred approach at every stage of the development of the guidance?
Given that it was announced in the Commons that there may be a “named person” on integrated care boards, which we have discussed at some length during the passage of the Health and Care Bill, what role will they have in ensuring the compliance of public bodies with the guidance? Will that be solely for people with Down’s syndrome, especially in the light of the past practices of CCGs, which I have outlined?
I will make a brief point on the proposed guidance. As my noble friend Lady Jolly said, will Ministers ensure that the principles of “No decision about us without us” ensures that the voice of people with Down’s syndrome is represented? Although the Commons has a mechanism to scrutinise guidance, that is not true in your Lordships’ House, so will the Minister undertake to ensure that there is time for a debate on the guidance, as it is published and debated in the Commons? As the noble Baronesses, Lady Bennett and Lady Uddin, outlined, government resources have been a real issue. The net is full of holes not through a lack of guidance, White Papers and good will but through a lack of government investment and strategic leadership for over a decade.
I think that everyone who has spoken at Second Reading today and in the Commons is passionate about ensuring that people with Down’s syndrome and their families can remove the current structural and social barriers that they face. The concerns that a number of Peers have raised today are important, and the Lords needs to be able do its job and to have responses from the Government in Committee and on Report to ensure that the Bill can deliver its aspirations and that it will not penalise others with learning disabilities because of a new hierarchy of resources. So will the Minister agree to meet those who have spoken of their concerns today prior to Committee, when it is clear we will be looking at a number of amendments?
Baroness Thornton (Lab)
My Lords, we have had a fascinating debate, in which the passion for supporting people with Down’s syndrome is absolutely undoubted in this House. I pay tribute to and congratulate Dr Fox, on bringing the Bill forward, and the noble Baroness, Lady Hollins, on her tireless work for those with learning disabilities over many years. These Benches have often been pleased to follow her lead and support her in this endeavour. I do not doubt that many of the 40,000 people with Down’s syndrome and their families will be watching and listening to this debate today, so I am happy to assure them that the Labour Benches will support the Bill at Second Reading.
We recognise that there are questions that will need to be answered during the Bill’s passage, and I am sure the noble Baroness, Lady Hollins, is aware of that. Of course, the first, identified by several noble Lords, is that singling out Down’s syndrome potentially misses the opportunity to ensure that authorities consider other conditions: autism, Rett syndrome and Williams syndrome. Indeed, the Genetic Alliance has contacted me to express its concern about other conditions being relegated. We do not want to create a hierarchy.
For example, as has been mentioned, antiviral Covid treatments have recently been approved for people with Covid-19 who are at the highest risk of becoming seriously ill. Down Syndrome is at the top of the eligibility list whereas other genetic conditions that confer the same or similar risk of becoming seriously ill are not mentioned at all. We do not want to be involved in something that inadvertently creates those kinds of problems and challenges for other learning-disabled people.
However, I welcome the department’s commitment that new guidance will be formed in consultation with key stakeholders. As your Lordships’ House may know, the Health and Care Bill, which many of us here have been involved in, sometimes late at night, has finished its Report stage. I need to congratulate the noble Baroness, Lady Hollins, on the commitment that she gained only this week, and I quote her from Hansard:
“I am very grateful … to the Minister and to all those working behind the scenes for reaching this point and accepting my amendment, as well as for committing to include a learning disability and autism lead on integrated care boards.”—[Official Report, 16/3/22; col. 398.]
My first question is that I wonder whether the noble Baroness may have inadvertently made the Bill a redundant piece of legislation because of the success that she has already had in raising the issue and getting it included in the Health and Care Bill, which we have had before us for what seems like quite a long time—the last month or so. That is my first question to the noble Baroness and the Minister. My second question to them is that I would like to be assured that the work being undertaken will not disadvantage other people with learning disabilities. I would like to be assured by the Minister that if the Bill proceeds, people with Down’s syndrome, in their diversity, and their chosen advocates will be meaningfully involved at every stage of the co-production of the guidance.
I am concerned about some of the rhetoric that has surrounded the Bill. I would like the noble Baroness and the Minister to confirm that the Department of Health and Social Care has no plans, as a consequence of the Bill, to develop any new guidance or amend any existing guidance concerning maternal healthcare and reproductive rights.
I wish the Bill the best, and I look forward to the discussions that we shall have about it in Committee in your Lordships’ House.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
My Lords, I thank my friend, the right honourable Member for North Somerset, Liam Fox, who was here earlier; I thank the noble Baroness, Lady Hollins, for introducing the Bill in this place; and I thank all noble Lords for their contributions today.
Many who have spoken today have talked about their experiences of their own contact with people with Down’s syndrome. When I was a child growing up in Edmonton in north London, there were a couple of children in our neighbourhood who I sometimes used to play with who had Down’s syndrome. It is interesting to note that the words we used to describe them in those days would today be considered offensive. It is absolutely right that, as language evolves, we learn how to describe people with different conditions.
On that note, I take this opportunity to thank Rachel Ross from the National Down Syndrome Policy Group for sending me and other noble Lords the appropriate language and terminology. It is important that we get this right, and I know that there is cross-party consensus on that. If noble Lords have not received that, I have a copy in my pack and I will be happy to forward it on to them.
I want to be clear at the beginning that if there are no amendments, the Government will be able to give time to the Bill to support it. I should be clear about that from the start.
We agree on the need to improve life outcomes for people with Down’s syndrome; that case is compelling. It is very common for people with Down’s syndrome to experience compounded health risks compared to the general population. Some noble Lords have made the point that people may have more than one condition. We should be aware of the statistics: nearly half of children born with Down’s syndrome have a heart condition. People with Down’s syndrome face an increased risk of early onset dementia, and the NHS recommend regular check-ups to look for these signs from the age of 30. People with Down’s syndrome are also far more likely to experience recurring infections and become seriously unwell. This can be life threatening. Sadly, although life expectancy has increased, the risk of death for adults with Down’s syndrome can be around five times higher than for the general population. Despite this, people with Down’s syndrome are living longer. In 1983, the average person with Down’s syndrome lived to 25 years old. Life expectancy is now typically around 60 and has increased substantially in recent years.
There are existing legal frameworks in place which require health, care, education and housing authorities to consider a person’s individual needs regardless of their condition. However, there is evidence to suggest they have not always worked as intended for people with Down’s syndrome. That can be due to the lack of understanding or appreciation by commissioners and providers of services of the unique needs of people with Down’s syndrome, reducing the quality of care they receive and their overall life outcomes. For example, children with Down’s syndrome may remember and learn information in different ways from other children. This Bill is a significant opportunity to drive forward important changes, raising understanding and awareness of the needs of people with Down’s syndrome.
For the first time, legislation will require the Secretary of State to produce guidance to health, care, education and housing authorities about how to meet the needs of people with Down’s syndrome. Those authorities must consider the guidance; the relevant authorities will not be able to ignore it, and they must provide strong reasons for not following it. The practical impact of this guidance should not be understated. It will raise awareness and understanding of the needs of people with Down’s syndrome, and it will support authorities to recognise how to adapt services to meet those needs, ensuring that people with Down’s syndrome, their families and carers can get the support they need. That is why the Government support the Bill.
I recognise that there are concerns that a condition-specific Bill may be divisive. I hope that I can gently disagree, but also reassure noble Lords. This Bill is not about enhanced rights for people with Down’s syndrome; it is about making sure these identifiable and unique needs are not overlooked when planning, designing and delivering services. The Government have committed to develop the guidance through inclusive consultation with all interested parties, including some of the organisations named by noble Lords and, of course, people with Down’s syndrome and their families, those operating services and the organisations and individuals that represent people with Down’s syndrome. In the other place, as noble Lords have acknowledged, the Minister of State for Care and Mental Health made a clear commitment that in developing this guidance we will consider the links and similarities that Down’s syndrome has with other conditions. This consultation will make sure that all the available evidence and experiences can be considered to identify what support and interventions will best meet people’s needs.
We anticipate that the guidance will be published within a year of the Bill receiving Royal Assent, should it do so. At that time, Members in the other place and your Lordships will have the opportunity to scrutinise the guidance when it is laid before Parliament. Of course, people with Down’s syndrome and their families need to feel confident that this guidance will not be ignored—that it will result in action, and there will be avenues available to them if they do not believe they are receiving the appropriate care and support. There will be accountability at local level to make sure that this guidance is implemented. The Government made the commitment in the other place that statutory guidance relating to the Health and Care Bill will require ICBs to have a named person overseeing how the guidance is implemented and taken into account in practice.
I reassure your Lordships that this does not restrict the oversight to health and care authorities. ICBs are required to work with local authorities to establish integrated care partnerships, which bring together organisations to decide how to best address public health needs, including housing and education provision. The guidance will be subject to regular review to make sure that it remains current.
If noble Lords will allow me, I shall try to address some of the specific questions that were asked. It is important that I try to answer them. In response to the noble Baroness, Lady Jolly, officials are talking to stakeholders about this Bill, including the Down’s Syndrome Association and the National Down Syndrome Policy Group, to understand how it fits in and alongside wider policy on learning disability. We will keep the guidance under review and expect to update it periodically as policy and practice changes. I hope that this will be living, learning guidance, rather than just something that sits on dusty shelves for years. If we think about how our language and understanding has evolved, of course it is only right that we update that guidance as research increases and we learn more about this condition and other genetic conditions.
I am afraid that the reality is that it is difficult to say when an in-the-round look at services for people with Down’s syndrome was last done. In some ways, the fact that we cannot directly answer the question of the noble Baroness, Lady Jolly, highlights the need for this Bill and to shine a light on this issue. It is through wide consultation that we will determine the appropriate and best practice of this service for people with Down’s syndrome. I hope that noble Lords will contact me, as the Minister responsible, if they are contacted by any organisations which say that they have not been included in the consultation. I know that sometimes, noble Lords kindly apologise for writing to me, but that is my job as the Minister, and I accept that I should be held to account in this place. I hope that noble Lords, if they feel that any organisations are being ignored, will write to me.
The noble Baroness, Lady Bennett, rightly raised concerns, which we have received, regarding how this relates to abortion. For the avoidance of doubt, the Bill is limited to the needs of a person with Down’s syndrome after they are born. This means that it does not address abortion. This Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. Statutory guidance cannot be used to amend primary legislation such as the Abortion Act. By setting out in statutory guidance the steps that would be appropriate for health authorities to take when providing services and support to people with Down’s syndrome and their families, we believe there will be a wider positive impact for expectant parents who are told their unborn baby may have Down’s syndrome. However, the Bill is still about the child after they are born.
I thank my noble friend Lord Farmer for engaging with me on this issue. The Government rightly recognise that people with other conditions may experience similar problems. This is why I reiterate the commitment made by the Minister in the other place that we will consider the overlaps and linkages, as my noble friend Lady Neville-Jones said. We recognise the concern about services prioritising different groups of people in a way which is not focused on assessing people’s needs. I point out that any preference of which noble Lords may be fearful would be unlawful under the Equality Act 2010. The guidance is about making clearer the steps that could be taken to meet the unique needs of people with Down’s syndrome. This is something the guidance could emphasise strongly. We will engage and consult upon this in detail when developing the guidance.
Turning to one of the issues raised by the noble Baroness, Lady Uddin, I hear the concerns expressed about consulting with people with Down’s syndrome and other conditions. We are committed to ensuring that this guidance works, and that it evolves as we learn more. We believe that the best way of addressing this is to do it once the Bill has passed. Issues were also raised about the completion of the SEND review. Unfortunately, it has been delayed due to the pandemic. Also, the pandemic has highlighted some very real issues, and exacerbated some of them. Therefore, even though it is irritating that it has been delayed, it is only right that we take advantage of the light which has been shone upon the exacerbation of those conditions to ensure that we have appropriate guidance.
The Department for Education plan to publish proposals arising from the review of a public consultation by the end of this month. It is important to hear from a wide range of people, including the noble Baroness, Lady Uddin, given her years of experience, as well as the many organisations with which she has worked over the years. I emphasise that this is not about giving preference to people with Down’s syndrome. It is clear that to do so would be illegal under the Equality Act 2010.
In conclusion, I know that there are noble Lords who have concerns about this, and I am grateful to the noble Baroness, Lady Thornton, for her commitment that she will support the Bill. I make a plea to all noble Lords. Given, as my noble friend Lady Neville-Jones said, the time frame and the amount of legislation we trying to get through, if this Bill is amended, it may well fall.
Some of your Lordships may have read the Robert Caro biography of Lyndon B Johnson. In that book, it talks about his amazing career and at the end, one of the things it covers is the 1957 Civil Rights Act. That was criticised by a lot of people for not doing enough. Johnson’s plea to them was, “Let’s take this, bank it and build on it”. That led the way to the 1964 Civil Rights Act. Now I am not saying that I want to equate those Acts in any way with the Bill, but they are about recognising issues that ought to have a spotlight shone upon them.
I therefore make this plea to noble Lords: let us together take this step. Please let us support the noble Baroness, Lady Hollins, for all the work she has done and for the way she has pushed the Government during the Health and Care Bill and highlighted many of these issues. One of the things I find as a Minister in this place is how much I am still learning daily, about not just my portfolio of technology, innovation, life sciences and international relations but the many conditions that people have, and what more we can all do to help them. I hope that noble Lords will feel able to support the noble Baroness, Lady Hollins, and not amend the Bill, otherwise we risk not taking that first step.
Baroness Neville-Jones (Con)
My Lords, on the basis of what my noble friend the Minister has just said, is he open to further discussion on the Bill between now and Committee? I did ask, but I do not think he said whether he was ready to talk further. I think there are perhaps others in the Chamber who might be interested.
Lord Kamall (Con)
I hope the noble Baroness will not take this personally and I am sorry I forgot to answer that specific question. I am sure noble Lords will recognise that a number of questions were directed at me. I hope they will also recognise that I always try to answer as many questions as I can, and we go through Hansard to make sure that we sweep up afterwards, as it were, and write to noble Lords. I will of course be happy to have further conversations. It may be me or the relevant Minister at other times, but I am very happy to make sure that there is a Minister who will consult with the noble Baroness, and with any other noble Lords who feel that their concerns are not being heard enough; we can make that commitment.
Baroness Hollins (CB)
My Lords, I thank all speakers today for such a stimulating and informed debate, and others who were unable to be present, including my noble friends Lord Crisp, Lady Watkins and Lady Campbell, and the right reverend Prelate the Bishop of Durham, who had hoped to speak. I also thank David Nuttall, the Department of Health and Social Care civil servant who leads for learning disability, for his advice and help in preparing for today, and the Minister for his assurances.
I hope to reassure the noble Baroness, Lady Bennett, that there is no intention or possibility of this Bill affecting women’s reproductive choices. The Bill gives authority to the Secretary of State to produce statutory guidance which will clarify existing frameworks and practices. It cannot be used to amend primary legislation, such as the Abortion Act. The noble Baroness also mentioned that the Down’s Syndrome Association was not involved in drafting this Private Member’s Bill. I have spoken to the chief executive of the association at some length. When I asked her about the Bill, Mrs Boys said it would be more divisive to stop the Bill than to let it pass, and that it would be more constructive to work alongside others to ensure this guidance is as effective as possible. She told me that she supports it.
If amendments are laid, the Bill will be killed. If there are no amendments, Third Reading will take place on 1 April. If the Bill does not pass, it will fall into oblivion—yet again, out of sight and out of mind. There will not be another Bill for learning disability to replace it. The desire for the perfect is so often the enemy of the good. People who know me well know that I am absolutely committed to empowering people to be fully involved—it is absolutely “Nothing about us without us”. Would it not have been good if somebody with Down’s syndrome could have stood here today to speak about it?
In the other place, there was a commitment to ensure co-production of the guidance. The co-production and co-delivery of training is embedded in the Oliver McGowan mandatory training amendment, which we have spoken about and which was approved just two days ago. I believe assurances from Ministers that the consultation on the development of the guidance will be fully inclusive.
The noble Lord, Lord Farmer, spoke about 22q deletion syndrome. I know that the Minister in the other place specifically acknowledged that people with similar needs as people with Down’s syndrome would also be considered in the guidance. I believe that the Bill is another step on the way to improving access to the health, care, education and housing that all people with Down’s syndrome are entitled to in their desire to live fully participating lives in our shared world.
The former US President Calvin Coolidge said:
“Nothing in the world can take the place of persistence.”
I commit to continuing my drive to see people with Down’s syndrome and all people with learning disabilities lead full and healthy lives—ordinary lives—in inclusive communities. I believe that the first step to increase awareness and support for person-centred care for people with learning disability is to talk about it. The discourse in Parliament itself on this Bill is part of the jigsaw. Noble Lords will know that this was my approach in raising the issue of mental health up the agenda— first, get it on to the agenda. I am an optimist. I beg to move.
Down Syndrome Bill
Monday 28th March 2022
(2 years, 8 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Baroness Hollins (CB)
My Lords, I understand that no amendments have been set down to this Bill and that no noble Lord has indicated a wish to move a manuscript amendment or to speak in Committee. Unless, therefore, any noble Lord objects, I beg to move that the order of commitment be discharged.
Down Syndrome Bill
Friday 1st April 2022
(2 years, 8 months ago)
Lords ChamberRead Full debate Down Syndrome Act 2022 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 January 2022 - (26 Jan 2022)
Baroness Hollins (CB)
My Lords, I beg to move that the Bill do now pass. I thank all those who have worked on the Down Syndrome Bill to get it to this point, including Dr Liam Fox for drafting and steering it through the other place with cross-party support. I note that many of the Members of Parliament who spoke in that debate talked about their own constituents with Down syndrome, which is an explanation of why the Bill had quite so much support. Many members of the National Down Syndrome Policy Group are in the Public Gallery today and I extend a warm welcome to them. I thank Ministers and officials for supporting the Bill and those across the House, including the Opposition Front Benches, who have engaged in debate and, in particular, for the constructive spirit in which concerns were raised. I hope that those who had concerns have been reassured.
I believe that this Bill will increase awareness and improve access to services for people with Down syndrome. It is my hope that the Down Syndrome Act will open up a wider conversation on how to improve public services for people with other chromosomal disorders or disabilities, as well as all people living with learning disabilities. To this end, I am considering reviving my previous Private Member’s Bill, which would require the Secretary of State to undertake a public consultation to review the provision of services—including health and care, but also employment and housing—for all adults with learning disabilities. Perhaps the time is right to take things a little further and review the impact of recent and forthcoming legislative and policy developments. This includes the Down Syndrome Act, the Oliver McGowan mandatory training in learning disability and autism, the inclusion of an executive lead for learning disability and autism on integrated care boards, the planned integration of health and social care and building the right support action plan, among others.
When this Bill gains Royal Assent, in some ways, the real work begins with the process of creating the guidance. This is the time when all stakeholders will need to pull together and heal any divisions that have occurred.
Baroness Merron (Lab)
My Lords, the commitment to supporting people with Down syndrome has come through loud and clear in your Lordships’ House. I pay tribute to, and congratulate, Dr Liam Fox on introducing the Bill in the other place and the noble Baroness, Lady Hollins, for steering the Bill through your Lordships’ House with her characteristic professionalism and sensitivity. We are glad to follow her lead. From these Benches, we give our support to the noble Baroness in her endeavour, through this Bill, to support the 40,000 people with Down syndrome. They and their families, friends and communities will be appreciative—as are we—of the recognition and improvements brought about through this Bill.
I know that the noble Baroness, Lady Hollins, is keenly aware of the point raised in earlier debate that, in the focus on Down syndrome, noble Lords would not want to create a hierarchy of learning disability which may inadvertently create challenges for other learning-disabled people. I very much welcome the words of the noble Baroness today in this regard. It is also welcome that the department has given a commitment that new guidance will be formed in consultation with key stakeholders. I am keenly aware that this Bill is not the end of the journey but just one step along the journey. In conclusion, I congratulate the noble Baroness, Lady Hollins, on her tireless work for those with learning disabilities, and I wish the Bill all the very best as it continues its path.
The Lord Speaker (Lord McFall of Alcluith)
My Lords, we have a remote contribution from the noble Baroness, Lady Brinton.
Baroness Brinton (LD) [V]
My Lords, I too want to join in congratulating the noble Baroness, Lady Hollins, on the Bill reaching the end of its legislative passage today. Her expertise and commitment to people with Down syndrome and other learning disabilities is well known and much respected—and not just in your Lordships’ House.
I rise to speak on behalf of some of the Peers who raised concerns about this Bill at Second Reading, particularly the noble Baroness, Lady Neville-Jones, and the noble Lord, Lord Farmer, who cannot be in their place today. I will start by saying what is good about this Bill. It has raised the profile of Down syndrome, which, speaking as someone with a nephew with Down syndrome, I say is a good thing and long overdue.
Your Lordships’ House will remember that eight of the 12 cross-party speakers noted that, if the Bill had the powers which its promoters suggest, there risks being a hierarchy of learning disability. This has already caused a split between families with learning disability, all of whom still need to fight for the limited resources to which the law says they are entitled. I am pleased to hear the noble Baroness, Lady Hollins, expressing her desire that the objectives of this Bill are extended to other people with genetic conditions and learning disabilities. I am sure that she and I—and others —will be looking to future government Bills to make a real difference to the lives of all people with learning disabilities.
I will not go through the details of the concerns we had before, because now is not the time. One of my great concerns is that the hopes of many families of people with Down syndrome have been raised beyond the powers in this Bill. I hope that the Minister will ensure that those aspirations are met, not just for people with Down syndrome but for the wider learning-disabled community. I wish this Bill well.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)
My Lords, I begin by extending my congratulations to the noble Baroness, Lady Hollins. I am grateful to the noble Baroness for steering the Bill to this point. I also extend a warm welcome to those who were in favour of this Bill, some of whom are in the Public Gallery. I offer my thanks to the right honourable Member for North Somerset, Dr Liam Fox, who introduced this Bill in the other place. I also want to thank everyone else who has been involved in developing this important piece of legislation.
I know that a number of concerns have been raised, and I welcomed the scrutiny of the Bill two weeks ago at Second Reading. The Government recognised some of the points that were made. Noble Lords raised important matters about the risk of discrimination and widening inequalities, as well as how the proposed guidance could be developed, scrutinised and implemented in a fair and inclusive way. We have listened closely to these concerns, and I hope to reassure noble Lords on a few points so they can be confident in their support of the Bill and the impact it will have at this stage.
The guidance is about making clearer what steps could be taken by relevant authorities to meet the unique needs of people with Down syndrome. The Bill does not remove the duties under the Equality Act 2010 for relevant authorities to assess all the needs of people to whom they provide support. Our assessment is that, to prioritise funding and resources for people with Down syndrome above other groups without proper assessment of people’s needs would be considered unlawful.
The Government will consult with a broad set of stakeholders in developing the guidance, including those with other conditions. I want to be clear that people with lived experience will be at the heart of this at each phase of its development. We will strongly encourage and support people with other genetic conditions, disabilities and protected characteristics, and their advocates, to engage with this process. It is right that we support legislation that will improve life outcomes, reduce inequalities and build a fairer society.
Baroness Hollins (CB)
My Lords, I want to reassure noble Lords that I and others involved in this legislation, including seeing it through the parliamentary process, will do all we can to ensure that the process is as inclusive as possible. I know from experience that lived experience must be at the heart and soul of the creation of the guidance, and I welcome the reassurances given by the Minister here and the Minister in the other place on this. It has been a pleasure and an honour to sponsor this Down Syndrome Bill through your Lordships’ House.
The Lord Speaker (Lord McFall of Alcluith)
My Lords, I also welcome the Down syndrome carers and supporters this morning.
Royal Assent
Thursday 28th April 2022
(2 years, 7 months ago)
Lords ChamberRead Full debate Read Hansard Text