That this House has considered World Down Syndrome Day.
I am grateful to have secured this debate, and I thank colleagues from all parties for their support in being able to do so. Two days ago I was honoured and privileged to be able to speak on behalf of the United Kingdom at the United Nations in New York on the 12th World Down Syndrome Day. It was an acknowledgement of the United Kingdom’s role as the country that has been the first to legislate in this area, of which we should be extremely proud. It was important that we took that opportunity to make the case.
When we passed the Down Syndrome Act 2022, it was a recognition of the strength of our electoral system. With the first-past-the-post system, whatever its handicaps, we are real constituency MPs with real constituents, and the fact that we are exposed to the complex problems they have enables us to be responsive to their needs and them to know who to go to when they need help with the problems they face. I also think that passing this legislation was a recognition of something we do not always do as politicians. One of the intrinsic problems in a democratic system is that we tend to get more credit for dealing with a crisis than preventing one. One of the key elements of this legislation is that it shows that Parliament can anticipate problems before they become a serious crisis-ridden issue. I will come back to that, if I may.
I thank all the charities associated with Down syndrome for the work they have done since the passage of the legislation, and I thank all those voluntary groups who helped with the consultation. I particularly thank the National Down Syndrome Policy Group, not least for its support for our function in Parliament, which I was unable to attend due to being in New York. I thank my hon. Friend the Member for Meon Valley (Mrs Drummond) who stood in so expertly to chair such a successful event.
The theme for World Down Syndrome Day this year was “With Us Not For Us”, and thinking about legal capacity and supported decision making is incredibly important.
We all expect and take for granted that we can make decisions about our lives—from where we live and whom we live with to what we study and where we work—and because we take these choices for granted, we must not forget that other people do not necessarily have the ability to do so. It is therefore absolutely right that people with Down syndrome are involved in all the decisions that affect their lives.
As I said when I was in New York, 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 and so, inevitably, do their families, who will face different challenges. Those challenges come, as we all know, in the form of medical problems, educational needs and long-term care challenges. The consequential change in life expectancy was one of the main reasons that we passed the legislation in the first place. I believe that every individual with Down syndrome has the same right to life, quality of life, dignity and independence that the rest of the population take for granted.
I congratulate the right hon. Member on today’s Backbench Business debate and the Act that he got through Parliament. Whether a child attends a special educational needs and disabilities-specific school or a mainstream school with SEND support is not dependent on any particular condition or diagnosis, but dependent on where the child’s needs can be best met. Children with Down syndrome can thrive in mainstream education, so does the right hon. Member agree that increasing awareness of the condition among education professionals, parents and all children is important in ensuring that children with Down syndrome have access to the right learning environment for them?
I am grateful to the hon. Lady for making that point, because we can pass as much legislation as we like, but if the professionals at the sharp end, who are required to implement any changes or guidance, do not have sufficient understanding of the problem they are facing, we are all at a deficit in our response. I think the issue of professional education is so important not just for teachers, for whom it obviously is important, but for the medical profession, the social work profession and those involved in local government, who will deal with some of those issues relating to care, particularly long-term care. I think it is an extremely important issue.
I was able in the UN debate to show how the United Kingdom has a very proud record in legislation in this general area. The UK has a long-standing tradition of ensuring that the rights and liberties of disabled people are protected. We ratified the UN convention on the rights of persons with disabilities in 2019. Internationally, our disability inclusion and rights strategy sets out the ambition to embed disability inclusion across all our diplomacy, policy and programmes. The Equality Act 2010 legally protects people in England, Wales and Scotland from discrimination in the workplace and in wider society. We also have the Mental Capacity Act 2005, covering England and Wales, to ensure that every attempt is made to support someone to make decisions about their own lives, and that of course includes people with Down syndrome.
I would like, if I may, to say a word about the Down Syndrome Act and remind us why we passed this legislation. Primarily, it was about empowerment. The Act legislates not for Down syndrome, but for people with Down syndrome. It requires the Government in England to produce Down syndrome-specific guidance relating to health, social care, education and housing services. I hope that Members from Scottish and Welsh constituencies may be able to update the House on how this legislation is being adapted and implemented there. I will come back, if I may, to the point about its being Down syndrome- specific, because I have some concerns that that may be being lost in some parts of the consultation process.
This will be very important for people in the Down syndrome community who believe they are being diagnostically overshadowed and that things are being missed. Does the right hon. Gentleman agree with me that that is particularly important when enforcing someone’s rights in relation to healthcare?
It is. Diagnostic overshadowing is very important, in that we should not miss things in people with Down syndrome because we are looking the other way, or we are distracted by the diagnosis and not looking sufficiently at the person. Greater professional education—and this goes back to the point made by the hon. Member for Rutherglen and Hamilton West (Margaret Ferrier)—is a key part of the empowerment of the individuals for whom this legislation was produced. I know from my own medical education that there was not a great deal of it that involved us learning about specific needs. For the medical profession, the sort of overlooking that the hon. Gentleman describes is a real risk if the thought is not there that someone may see a different position from the one they should because of the very overshadowing that he describes. I imagine he may enlighten us further on that particular issue, and I hope he will because it is a real issue that needs to be examined fully.
The second important change in our legislation was that we included in it the need for a named individual on the new integrated care boards to be responsible for the implementation of the Down Syndrome Act. A very senior Member of this House said to me during the passage of the Bill in Committee, “Do the Government realise the floodgates that they may be opening in agreeing to this?” I said that I was not sure, but that it really was not my problem. I think this is a tremendous innovation, because all too often we have an anonymised bureaucracy when it comes to the delivery of the things that Parliament intends. We can vote for things in this House and, with taxpayers’ money, we can fund them, but if we do not know who is responsible for the delivery in our own locality, it becomes difficult for us as Members of Parliament to know who to get in touch with.
The de-anonymisation of the civil service, which is something I have long and profoundly believed in doing, received its first outing in that Act. It may be a by-product —in my mind it was not that; it was an essential principle —but none the less it is extremely important. With this new system, for the first time, individuals, families and advocates for people with Down syndrome will know who is responsible. For once, there will be a named person in our system who people can turn to for either assistance or redress, depending on the nature of the problem. I hope we will extend that principle further in the provision of public services. For too long in this country, taxpayers have provided the funding, but they do not have accountability in the delivery mechanisms of those public services. It is, in many ways, a quiet revolution that I hope this Act will usher in. It is a principle and a precedent that has been much understated in the interpretation of what Parliament has done.
I congratulate the right hon. Member for North Somerset (Dr Fox) on securing this debate, and on the passage of his Act. I enjoyed his contribution this afternoon, advocating for individuals in the Down syndrome community. I assure him that I was at the parliamentary event on Wednesday, and there were people from Scotland down in the Lobby discussing some of those issues. It was a privilege to be there. It is also a privilege to be an elected representative, and one of the privileges that come with that is that we meet those we represent who speak truth to power. On Saturday, my constituent, Danielle Urie, came to see me at my Ibrox surgery. She asked me to participate in this debate, which is why I am here this afternoon. I asked Danielle to write to me about some of the things she wanted to say, and after the exchange I had with the right hon. Gentleman about diagnostic overshadowing, I am afraid that, sadly, there is an example of that coming up.
Danielle is currently going through the complaints procedure with the health service in Scotland to discuss some of this. I asked her, and her son Steven, to go through their experiences, and I will read what Danielle sent to me last night:
“My name is Danielle Urie. If my son Steven could speak, I’m sure this is what he would say. ‘My name is Steven I am 11 years old. From 2019 to 2021 I was diagnostically overshadowed by doctors which resulted to damage in my body that can never be reversed, while sitting in chronic pain and bleeding for two years. I am now left with a permanent stoma and my large bowel being completely removed. During this time I had been treated with no respect, and left with no dignity.’ If Steven was a typical child who could voice for himself I don’t think any of this would have happened. I want you to all know the catastrophic consequences that can happen with diagnostic overshadowing, because it’s real and it happens more than you all think. To have no control on what happens with your child’s healthcare is terrifying . I don’t want my child or any child in fact to be added to the statistics of people with Down’s syndrome dying as a result of being diagnostically overshadowed.”
First, I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all the work he did to ensure the Down Syndrome Act 2022 became law.
During our lifetime, there has been a significant change in attitude towards Down syndrome. Undoubtedly, there is still more that can be done to improve the quality of life and opportunities of people with Down syndrome, but as we mark the 18th anniversary of the first World Down Syndrome Day, we should not forget the progress that has been made in understanding the condition and supporting those with Down syndrome to be treated fairly so they are able to live full and productive lives.
I speak with personal experience. My father had an elder brother, Donald, who had Down syndrome. I was only told of his existence when I was 27 years old and pregnant with my second child. Donald died in 1946, aged about 25. He spent all his life in an institution, which was standard practice at the time. My father did not talk about his brother. He found it too painful. My mother explained to me that when my father was a small child, my grandmother had taken him with her every month to visit his brother in the institution and the experience had traumatised him.
When I spoke during the Down Syndrome Bill debate last year, I referenced the BBC series “Call the Midwife”, which documented attitudes towards Down syndrome and how they started changing in the 1950s and 1960s as people with Down syndrome were able to take an active part in their communities. Not only have attitudes changed, but life expectancy has increased dramatically in recent decades from 25 years in the 1900s to 60 years today. Medical science has advanced and people can live extremely healthy and long lives, and make a great contribution to our society.
I am incredibly grateful for this opportunity to celebrate the achievements and contributions of people with Down syndrome to their local communities and to our society as a whole.
I congratulate the right hon. Member for North Somerset (Dr Fox) on securing the debate. We are all encouraged by the situation. What comes to my mind is a young gentleman called James Martin, the 31-year-old who starred in the roaring success, “An Irish Goodbye”. He has gone from working in Starbucks to living his dream by winning a globally recognised award. Most importantly, he has never let his disability get in the way of goals and achievement. Does the hon. Lady agree that James is a true role model to all individuals out there who feel that society restrains them due to their disability, and reminds them that the world is their oyster—or in this case, their Oscar?
I thank the hon. Gentleman for his intervention. He is absolutely correct.
In Stoke, the Stoke and Staffordshire Downs Syndrome Social Group was set up in 2016 by a family in my constituency after their son was born with Down syndrome and the couple walked away from hospital with just a factsheet about the disorder. Today, the group meets regularly in Birches Head and is making a difference to the lives of more than 50 families by organising regular trips and activities, as well as supporting families emotionally and connecting them with wider support groups.
I would also like to highlight the great WorkFit programme for its role in making workplaces more inclusive. WorkFit is an employment programme that matches places and supports individuals with Down syndrome into work, with more than 1,000 individuals successfully accessing the service to date. In my constituency of Stoke-on-Trent Central, I was delighted to hear that the programme supported Grace into her role at Dunelm distribution centre, where she works dealing with returns from customers. She works two days a week and really enjoys being part of a great team who are very supportive. She uses her computer skills to process returns from customers and is very proud of her job.
Last week’s Budget outlined ways in which we would like to see a greater proportion of working-age people in employment, with a specific emphasis on supporting disabled people into work. One thing I would like to see is an improvement in ensuring that public transport services are available for travelling to and from work, so that a lack of access is not a barrier to that aim. Indeed, while it is wonderful to hear stories like Grace’s, according to the Down’s Syndrome Association, people with Down syndrome often face barriers and prejudice, lack of opportunities, low expectations, stereotyping and other negative attitudes. A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, but only 6% have a paid job.
Mr Deputy Speaker, I hope you will forgive me, but my constituent Ed Daly is in the Public Gallery with his mum, Jane. They spoke at the event on Tuesday in Parliament and they are fantastic advocates for this cause. Everything my hon. Friend says absolutely sums up what they have been saying to me. Will she, as I do, pay tribute to them?
I absolutely do pay tribute to them. I cannot see them in the Public Gallery, but it is wonderful that they are here to listen to the debate and to hear all the support there is for them in the House.
Support in decision making is really good. We all need help from people who know us and want the best for us. But people should have the right to make the final decision, the right to dignity and individuality, and the right to be in control of their lives.
I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing this important debate on a subject close to my heart. It is important in such debates to talk about real people. There is a real person in Ashfield called Jossie May. She is seven years old and has Down syndrome. Jossie’s family want the world to see the real Jossie. Is Jossie different? Yes, she is. She is beautiful, funny, clever, friendly, happy, and all the things that I want to be but unfortunately am not. She is a role model to us all, so I guess she is different. Jossie’s family know that she will face certain barriers when she gets older, but with the right support in place, Jossie can achieve many great things and make a fantastic contribution to our society. Why should she not be allowed to do that? She should be.
Gone are the days when we would hide away children with Down syndrome, and thank goodness for that. Why should we hide them away? They have as much right to enjoy life as we do, but it is up to us as a civilised society to ensure that we remove as many obstacles as we can. With the right education and support, young Jossie could go on to lead a happy, contented and independent life where she can work and look after herself. Is that not what we all want?
Jossie’s family are aware that we have made great strides in education over the past 30 years, but we still have a long way to go with Down syndrome. In the right settings and with the right support, whether in mainstream or special schools, surely we can do a little more to help members of our Down syndrome community. We want a world where we do not have to fight so hard for people such as Jossie. There also needs to be acknowledgment that, like any other human being, those with Down syndrome have different levels of ability. We are all different, and have different abilities. Some will be capable of living independently with some support; some will never be able to do that. We need to look at each person as an individual and ensure that they are supported by the correct decision making.
It is a huge pleasure to speak in this afternoon’s debate. I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing it, for his groundbreaking work in this area and for his Bill, which was passed into law last year.
As we have heard, the theme of this year’s World Down Syndrome Day is “With Us Not For Us”—apt recognition of the fact that people with disabilities have the right to be treated fairly and to have the same opportunities as everybody else, working with others to improve their lives. Nowhere is that exemplified more brilliantly than through the work of the world-famous, world record breaking Music Man project—a Southend-based education and performance service for people with physical and cognitive learning difficulties such as Down syndrome.
The Music Man project reverses perceptions around disability, including Down syndrome, on a scale rarely seen before. The project has been so successful that there are now regional centres across the United Kingdom and even around the world. None of that would have been possible without the incredible leadership and drive of the Government’s disability and access ambassador for arts and culture, Southend’s very own hero David Stanley BEM. He really does deserve a knighthood. David’s mission in life has been to support people with learning difficulties to achieve what would once have been unthinkable. He is the living embodiment of, “With Us Not For Us”.
David Stanley’s students recently performed alongside the Massed Bands of His Majesty’s Royal Marines in the Mountbatten festival of music at the Royal Albert Hall. A total of 15,000 people gave them a standing ovation over three performances. One such supporter was none other than His Majesty the King, who rose to his feet to applaud these incredible musicians. It was a remarkable moment and testament to the power of music to shine a light on a once forgotten society.
2:20 pm
20 of 37 shown
It is important to remind ourselves about the legislation. Under the Act, public authorities such as hospitals, schools or social care providers cannot ignore the guidance when commissioning and delivering services. The guidance must set out what the unique needs of people with Down syndrome are, and what public authorities should be doing to ensure that the support needs of people with Down syndrome are met to enable them to live fulfilling lives. I will come back to this element of the guidance, because one of the issues we discussed in Committee—this has been a controversial issue in this House in relation to other legislation—is when does the guidance become instruction. If Ministers are issuing guidance that is in effect instruction, surely that should be laid before the House of Commons so that we can recognise the importance of that and scrutinise how ministerial authority is being used.
I think that for too long there have been too few levers available for individuals, families and their advocates, including us as Members of Parliament when it comes to getting fair treatment for our constituents with Down syndrome. After all, what is the point of rights in legislation if we cannot enforce them and if there is no mechanism to do so? That was one of the key elements we discussed during the passage of the legislation, and it led to two very important and, I think, innovative changes: the first is on parliamentary scrutiny, and the second is on individual empowerment.
One of the problems we have faced before is that, when Ministers issue guidance, there is very little ability for parliamentary Select Committees to take direct oversight of it. One of the principles we established—and I am very grateful to my right hon. Friend the Member for Chichester (Gillian Keegan), who is now the Secretary of State for Education, for her support in establishing this principle—is that if the guidance is in fact instruction, the guidance would be laid before Parliament, which of course means that the Education Committee, the Health and Social Care Committee and local government can all look at it in real time.
One of the things we considered was whether we would have to put a sunset clause on this legislation to enable Parliament to look at it again. The mechanism that we decided on—I think rightly—in this House and in the other place was that, in publishing the guidance, we would have real-time oversight, because when our constituents bring problems to us, we are all able to write to the Chair of whatever Committee it is and ask them to look into that particular aspect of how the Down Syndrome Act is functioning. That gives us, as Members of Parliament, a lever that we did not have before when we simply wrote a letter to a Minister and hoped for the best, which is not sufficient to implement the rights of our constituents in the way that I think we envisaged during the passage of the Act.
The guidance itself has been subject to long and detailed consultation, and I look forward to the draft publication in the summer. The Government face a number of challenges with this, which are worthy of debate. One question that was frequently raised in both Committee and the House was, “What about those with problems similar to those with Down syndrome; are we effectively creating a ladder of preferment in the provisions of public services?” Quite wisely, the Minister at the time said that it would be reasonable to consider those with overlapping problems at the same time as we were looking at the implementation of the Act. I say gently, however, that while that is absolutely right, we must also remember that the Act is specific to Down syndrome. When it comes to Down syndrome there is no doubt about the diagnosis, and unlike many other conditions where there are overlapping symptoms and signs to consider, there is no doubt about it. Down syndrome is not a subset of other conditions or of learning disabilities, although on a Venn diagram there will be a huge overlap; it is a specific condition and we must regard it as such.
I would like the Government to consider some specific areas, one of which relates to education rather than health. This is a formal request to Ministers to add Down syndrome as a separate category to the annual school census. Why? Because there is currently no Down syndrome-specific school data available, including numbers, location, or educational settings, because individuals with Down syndrome are included only in the general special educational needs and disability school numbers. If we are to have specific legislation, it makes sense to have specific data with which to interpret the success of its implementation. Children with Down syndrome in the education system will have specific speech and language issues, significant fine and gross motor delay, cognitive delay, hearing loss, visual issues—we detailed that on Second Reading—social and emotional needs, and specific and unique learning profiles associated with Down syndrome. Some of those conditions will be shared with other syndromes and medical conditions, but many will be specific to Down syndrome. If we are not to get the overshadowing problem, we must be clear about what we need to know about this.
In New York I was able to set out the sort of cases and advances that we have made in this country by being able to utilise a range of tools that enable people with Down syndrome to make more decisions for themselves. As we have a better understanding, for example among social workers and community medical staff, we are increasingly able to deploy those tools to ensure that those who have a voice—a voice that would not necessarily traditionally be recognised in our system—are able to make more decisions for themselves. That was at the heart of what the UN 12th World Down Syndrome Day meant.
I do not wish to speak any longer than necessary and take up colleagues’ valuable time, so I will end with this quote from Heidi Carter, who I have come to know increasingly well. She is a valiant campaigner for Down syndrome rights, and she states:
“I have shown everyone that Down syndrome is not something to be scared of and that people with Down syndrome live happy, amazing, fulfilled and independent lives!”
Congratulations to her and her husband on their marriage. I wish them well. She said:
“We are not going to give up. I think that all human life is valuable and should be treated with respect however many chromosomes we have!”
I do not believe there is a single one of us in this House who would not agree with that sentiment.
I want to thank Danielle for having the bravery to write to a Member of Parliament to share that particular experience.
The right hon. Gentleman invited us to talk about what is happening in other devolved nations, and I have some constructive criticisms about what is happening in Scotland. I do not think that everything is wrong with what the Scottish Government are doing, but I have some comments to make. The Scottish Government’s position is that they take a wider view and are committed to introducing the learning disability, autism and neurodiversity Bill as part of their programme for government. There are opportunities there. In delivering the Bill, the Scottish Government want to improve opportunities, outcomes and support for people with Down’s syndrome.
There will be a consultation on the Bill later this year. I will certainly be assisting Danielle, and any others, as a part of that. It will provide an opportunity for people to view the policy options that could be included in the draft Bill, including whether it should establish a commissioner. As part of their scoping work, the Scottish Government ran events with a wide range of Scotland’s disabled people-led organisations and national charities. The Scottish Government are working towards a human rights-based approach to ensure the Bill is fully co-designed with people who have lived experiences. It is very important, when shaping legislation, that people with those lived experiences are involved from the outset.
I would like to see the words “Down’s syndrome” included in the title of the Bill. I think that would be welcomed by those who came down from Scotland to the event in Parliament on Tuesday. Why do I think that is important? People with Down’s syndrome are more likely to be born with a heart condition and more likely to get leukaemia. People in the Down’s syndrome community are more prone to infections and thyroid problems, and more susceptible to eye and hearing problems. We want to ensure that those with Down’s syndrome get extra health checks, for example, and have access to speech therapy. It is very important that people with Down’s syndrome have those opportunities. Those are some of the reasons why I want the Down’s syndrome community in Scotland have the words “Down’s syndrome” in the title of the Bill. I will be working with Danielle and others to ensure that that is the case.
Everyone should have the right to work. People who have Down syndrome want to work for the same reasons as everyone else: to earn their own money, learn new skills, meet new people, feel valued, contribute to society, and have the chance to be more independent. Work is important for so many reasons and is a key part of our personal ambitions. For employers and their workforce, being equipped with the knowledge and understanding of how to better support a colleague with the condition is at the heart of the matter. In fact, it is key to achieving an inclusive work environment.
The same goes for education. The majority of children with disabilities in developing countries are currently out of school, while many of those enrolled are not in learning. To ensure that all children have access to quality education, education policies and practices must be inclusive of all learners, encourage the full participation of all, and promote diversity as a resource rather than as an obstacle. I was listening to an interview with a teacher recently, who said that she had seen such a difference in her class after moving from retrospectively altering her lesson plans for children in the class with Down syndrome, to thinking about how she can make a plan that includes the needs of all her pupils from the beginning. When we think about successful inclusion, it is about how are we supporting teachers to include and value everyone from the start, as opposed to adapting and modifying in retrospect.
The theme of this year’s World Down Syndrome Day is “With Us Not For Us”. I think that reflects my point well: a move from the outdated charity model of disability to working with others to treat them fairly so that they have the same opportunities as everyone else.
Great improvements have been made in access to education, but when a person with Down syndrome leaves full-time education, their employment opportunities are few and far between. We have a great project in Ashfield called the Rumbles cafe, where young people with learning disabilities are trained to work in a café. It is a life-changing experience for many young people, and provides a valuable service to our community, but the café faces an uncertain future, as the local council is bickering over the terms of the lease. It is truly a shocking situation.
Attitudes need to change. It should be not all about money but about outcomes. There also needs to be much more support post education. So many parents end up with a young adult who has little opportunity to integrate with their local community on a day-to-day basis. It is truly shocking. Every person deserves to be immersed in a community where they can get involved.
We need more research into health issues. There is a huge pocket of science within the Down syndrome community, such as on childhood leukaemia and Alzheimer’s, to name just two issues. Imagine what answers could be sitting there undiscovered in the Down syndrome community. It is an interesting fact that the cure rate for acute myeloid leukaemia in children with Down syndrome is higher than that of the general population. We should be looking into that more.
Lastly—this should be the simplest of all—I would like better signposting in maternity care. The Positive About Down Syndrome support service has made great strides to improve that, but there is still more to be done. I know Jossie. According to her family, she is every kind of wonderful and deserves a wealth of opportunities. Let us make a world where that can happen.
I was at the event in this place just a few days ago. I saw room full of wonderful young people, full of talent and ambition, with loving and caring families. If we cannot make the world better for those young people, we should not be here in this place. I am confident that the Minister will make sure that we do that.
Quite rightly, in February this year, David Stanley received a special recognition award from the National Lottery for his work with the Music Man project. Everyone in Southend is incredibly proud of his work and that of these incredible musicians with Down syndrome who are achieving so much. Some will know that one of their astonishing achievements was to come out with a Christmas single, “Music is Magic”, which made the top 10—it may have been at No. 10, but never mind. It was an amazing record, featured on BBC1’s “Breakfast”, Sky News, ITV’s “Good Morning Britain” and across national radio and press. It was officially launched with a performance at the Painted Hall in Greenwich, and the Prime Minister was presented with his own copy by the Leader of the House. I took my team to Waterloo station where the musicians were performing. It was an incredible and joyous occasion to help them and to sing with them there.
Not content with just storming the charts here in the UK, the Music Man ambassadors—bandassadors—also stormed America on their recent concert tour to San Diego, where they performed onboard the iconic aircraft carrier the USS Midway. Their groundbreaking collaboration with the Royal Marines connects elite military musicians with people with learning disabilities, through the universal language of music. Last year, they also received four “yes” votes from the celebrity judges of “Britain’s Got Talent”. Simon Cowell described them as
“like drinking a glass of happiness”.
Watch this space.
I could go on about the project’s incredible musical success. As I have said, it is the perfect example of “With Us Not For Us”. The students are treated as fellow musicians and enjoy the same incredible opportunities to express themselves and share their talents. As a result, musicians with Down syndrome are now role models for their community and global ambassadors for the UK’s accessible arts and culture. David Stanley himself says,
“Sometimes it feels as if I’m clinging on for the ride while they go on and make history.”
In preparing for this debate, I contacted the ex- headmistress of one of our special schools in Southend, who is now the CEO of the SEN Trust. There is more we can do to support people living with Down syndrome. Jackie Mullan, a brilliant champion of education for people with disabilities, has shared with me her concerns about the lack of post-19 college options for people with Down syndrome in Southend. There should be more options for people leaving college, whether that be entering the world of employment or enjoying better daycare opportunities. Sadly, at the moment, those are few and far between in Southend and are difficult to access due to the pressures on social worker workloads. She has even heard reports of families who have waited over six weeks just for a phone call to be returned about the options available. There should be a review of the guidance issued, looking at what is and is not available. That must be improved. I would be grateful if the Minister could confirm that the Government are looking into that.
There is so much to celebrate about the Down syndrome community and the champions we have in Southend, including Jackie Mullan and David Stanley. They are heroes, but only because of the incredible passion, energy, excitement and enthusiasm of the students they look after.