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 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 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 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 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 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 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 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 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 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.
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 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 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 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 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.
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 syndrome and their families. The second reason concerned the intellectual development of a person with Down 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 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 syndrome and their family. We had just moved house and one of our neighbours had a son, David, with Down 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 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 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.
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 syndrome. Like many people with Down 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 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 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 syndrome? When did that last take place? Who is responsible in Whitehall for ensuring they are appropriate? Is Down syndrome treated separately from learning disability, or are decisions made about those with learning disabilities taken as all right for those with Down syndrome?
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
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 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 syndrome to have a better and longer life than many realise is possible; to ensure that Down 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 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 syndrome: 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.
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 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.
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.
20 of 38 shown
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 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 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 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 syndrome rather than being investigated—this is called “diagnostic overshadowing”. The second is that people with Down 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 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 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 syndrome will be around for 70 or more years. Life expectancy is getting longer. Even if no more babies were born with Down 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 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 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 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 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 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 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 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.
What is critical about the Bill for me is that it will inform a new strategic approach to supporting people with Down syndrome before we encounter the situation that my nana could not have conceived of 80 years ago: a person with Down 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 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.
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 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 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 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 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 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 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 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.
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 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 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 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 syndrome—or any other learning disability—in any guidance written by the department.
“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 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 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 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 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 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 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 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.
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 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 syndrome in England, why on earth should I not be supporting it?
The Bill has been criticised for addressing Down 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.
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 syndrome, have due regard to and require consultation with people with Down 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 syndrome throughout their lives. It is expected to pave the way for more equitable services for people with Down 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 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 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 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 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 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 syndrome in all their diversity?