Down Syndrome Awareness Month
(4 years, 1 month ago)
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Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)
This is a particularly poignant debate for me to lead, as chair of the all-party parliamentary groups on disability and on inclusive entrepreneurship, which I will mention a bit more later. This year’s theme for Down Syndrome Awareness Month is “what holds me back”, which I will discuss, but I want also to speak about the real skills, abilities and potential of people with Down’s syndrome and why nothing should hold them back.
To begin, it would be appropriate to thank a number of organisations for their campaigning on Down’s syndrome inclusion and for their support in preparation for this debate and Down Syndrome Awareness Month. Those include Down’s Syndrome Scotland, the Down Syndrome Research Foundation UK, the Down’s Syndrome Association, Scope, Right To Life and Mencap, to mention but a few.
Elliot Colburn (Carshalton and Wallington) (Con)
Will the hon. Lady join me in also thanking organisations such as Get on Down’s in Carshalton and Wallington, and Lucienne Cooper, who has done incredible work to raise awareness of the needs of Down’s syndrome children in places such as Carshalton and Wallington?
Dr Cameron
Absolutely. I thank the hon. Gentleman for mentioning those very important organisations and the work that they do. It is a credit to him that he has come to the debate to speak and to commend the work they have undertaken.
Every year in October, people across the UK and around the world mark Down Syndrome Awareness Month. Among other things, it is an opportunity to celebrate the achievements and contributions of people with Down’s syndrome to their local communities and to our society as a whole. I tabled an early-day motion on Down Syndrome Awareness Month just a few weeks ago, and I urge Members across the House to consider signing it if they have not already done so.
Today I hope to build on this work and take the opportunity to add some individual names and narratives that speak to the talents, passions, hopes and dreams of those living with Down’s syndrome in the UK today. These are people who have been in touch with me in my capacity as chair of the all-party parliamentary group for disability and have participated on a number of occasions in our recent online meetings, which I have been extremely pleased to host and which have brought me up to speed with modern technology, much to my delight.
Jim Shannon (Strangford) (DUP)
I congratulate the hon. Lady on securing the debate. In my constituency, there are a number of groups that support those with Down’s syndrome and their families. Does she share my concern about the fact that the number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have introduced new non-invasive pre-natal tests, which will soon be available free of charge nationwide? It is beginning to mirror the process that sees almost 100% of Down’s syndrome babies aborted, which is chilling to the core.
Dr Cameron
I thank the hon. Gentleman for raising that extremely important point. I do share his concern. I understand that, in England, the number of babies born with Down’s syndrome is down by about 30%. I was alerted today to an article in one of our Scottish papers, the Daily Record, about Stacey Corrigan, whose six-year-old son, Daniel Murray, has Down’s syndrome. She said:
“When many think of Downs Syndrome it’s most often with a negative outdated view”.
She also said that the language used by medical staff when speaking to parents-to-be is really important and should not be negative, and that parents should be given “balanced information and support”.
As I was saying, I want to build on the positivity and speak about people’s talents, passions, hopes and dreams. Their accounts are not uniform and follow no common narrative, but that is exactly the point. The richness and diversity of the Down’s syndrome community across the UK reflects the richness and diversity of society at large. However, all too often their lives and contributions have historically been medicalised or pigeon-holed into discussions about difference and limitations rather than talent, skills, ability and contribution. A more comprehensive and accurate narrative needs to be provided.
One baby in every 1,000 in the UK is born with Down’s syndrome, and there are approximately 40,000 people who have Down’s syndrome living in the UK today. Down’s syndrome was first described by an English physician, John Langdon Down, in 1862, and that then became the universally accepted descriptive term. It is a genetic condition occurring as a result of an extra chromosome—chromosome 21. People with Down’s syndrome can experience cognitive delays, but the effect is usually mild to moderate and is certainly not indicative of the many strengths and talents that each individual possesses.
People with Down’s syndrome have an increased risk of certain medical conditions such as congenital heart defects and respiratory and hearing problems, to name a few, but many of those conditions are treatable. Nowadays, most people with Down’s syndrome lead healthy lives.
Bob Stewart (Beckenham) (Con)
I thank my friend, the hon. Lady, for giving way. My family had a child with Down’s syndrome when I was young, and unfortunately he died very young. Does she agree that modern medicine has extended the lives of people with Down’s syndrome so much that they live as long as anyone else—perhaps as long as me?
Dr Cameron
I thank the hon. Gentleman for all his excellent work in the House of Commons in so many ways, on this issue as well as on the armed forces. I totally agree with his point; in fact, I understand that life expectancy has increased dramatically in recent decades, from 25 years in the ’80s to 60 today. Medical science has advanced and people can live extremely healthy and long lives and be great contributors to our society.
Every person with Down’s syndrome is, of course, a unique individual. People with Down’s syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote—which we should all remember to do—and contribute to society in many wonderful ways.
Rachael Maskell (York Central) (Lab/Co-op)
I am grateful to the hon. Member for securing this debate, having worked with people with Down’s syndrome for many years. I put on the record my huge gratitude to the Once Seen theatre company in York, where people with Down’s syndrome act. Their acting is so powerful and so moving, because it is about life experience. Does she agree that we need to put on a platform so much of the talent that people with Down’s syndrome have?
Dr Cameron
Absolutely. I am thankful for that intervention, which exemplifies our debate and the change in the narrative that all of us across this House wish to see. We should be promoting the excellent work of those individuals and groups with Down’s syndrome who are achieving so much in society.
Up About Down is a campaign run by the Windsor Essex Down Syndrome Association, a fantastic charity that has being raising awareness about Down’s syndrome through positive and accurate information since it was founded in 1990. It is all about changing the narrative surrounding Down’s syndrome; it is about looking beyond medical prognoses and seeing the individual stories and successes of individuals with Down’s syndrome who live happy and fulfilled lives and who are crucial contributors to local communities, economies and industries. It is absolutely in that spirit that I bring this debate before the House.
In 2019, an article was published that caught my eye, entitled “10 brilliant breakthroughs by people with Down Syndrome”. It highlighted Zack Gottsagen, a theatre major graduate of the Dreyfoos School of the Arts who starred in
“a modern Mark Twain style adventure story, The Peanut Butter Falcon, which tells the story of Zak…a young man with Down syndrome, who runs away from a residential nursing home to follow his dream of attending the professional wrestling school of his idol”.
The article also highlighted Heba Atef, who
“became the first-ever Egyptian flight attendant with Down syndrome to embark on a special flight from Cairo to Khartoum…the ‘Journey of Humanity’ took place under the sponsorship of the UN International Committee and was specifically tailored for people with special needs.”
The article notes that the Swindon Advertiser reports that
“a scaffolder living with Down’s syndrome was named Britain’s number one apprentice. His boss, the owner of Coles Scaffolding company Martyn Coles, said Todd had great determination. ‘He comes in every day and proves people wrong. Winning the award just shows he can do it.’”
Emmett Kyoshi, a teenage artist living with Down’s syndrome in Chicago, hosted his third art exhibition in 2019,
“showing the world that the extra chromosome he was born with is anything but a disability.”
Then there are Madeline Stuart—the world’s first catwalk model with Down’s syndrome—and Francesca Rausi, who have been credited for proving society’s perception of beauty wrong. They had the opportunity of walking at New York Fashion Week and meeting some of Hollywood’s biggest stars; again, they changed the narrative.
Closer to home, Positive about Down Syndrome told me about Tom, who lives in London and has two part-time jobs as a barman and catering assistant and is also an award-winning weightlifter; Bethany who works for West Mercia police; and Hayley from Essex, who loves singing and acting and is part of a drama group performing at the London Palladium. These few accounts represent the stories of so many: those students with Down’s syndrome who are in college or university; those who have jobs and hobbies; those who are moving home, winning awards, falling in love, getting married and achieving great things.
For each of these stories, there are also children who have dreams and aspirations. I heard about Rebecca, who wants to perform on stage; Ben, who wants to be a postman; Jessica, who wants to be a pop star; Jack, who wants to play football for Nottingham Forest or Manchester United; Hollie, who wants to be a vet; James, who wants to be a police officer; and Samantha, who wants to be a make-up artist. I am sure that I speak for every parent when I say that we support and absolutely share in the dreams of our children every single day.
A sense of fulfilment and purpose that people with Down’s syndrome have from their work is a common thread connecting many of the accounts that I have mentioned. With that in mind, I draw particular attention to the work of the Down’s Syndrome Association and the importance of its WorkFit scheme. The WorkFit scheme was set up to train and assess employers who want to include those with Down’s syndrome in their workforce. All employers registered with WorkFit receive training, which includes their duties under the Equality Act 2010, and practical advice on how to make reasonable adjustments. The Down’s Syndrome Association is in constant dialogue with companies and organisations that have employees placed with them through WorkFit, to answer any queries they may have, and to work through any challenging situations. The programme was set up in December 2011, and to date it has placed 416 individuals with Down’s syndrome in a range of full-time, part-time and volunteer roles, as well as in adapted internships.
In recent weeks the Government announced the kickstart scheme, and I want to ask the Minister whether young people with learning disabilities, or disabilities, could perhaps be further supported through that scheme, or through an internship or apprenticeship. The excellent Speaker’s internship scheme for people with disabilities was developed in 2016, and perhaps there is more that hon. Members could do to support the training, inclusion, skilling and work of those who have Down’s syndrome.
I am delighted to chair the new all-party group for inclusive entrepreneurship, which was established to remove barriers and raise the profile of entrepreneurs with protected characteristics, particularly disabilities. We must also change the narrative more broadly from disability to ability, and from being solely about employees to people having the potential to become employers. Will the Minister consult colleagues in government, and find out whether there are particular supports and schemes for which those with disabilities can perhaps be given funding or additional support for adaptations, so that they can start their own businesses with their skills, talents and abilities?
A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, although only 6% have a paid job. We need to address that, and we must all play our role in our constituencies, and by working across the House and across parties, to ensure an inclusive employment programme for everyone across the UK. In this time of covid a recession could occur, and many jobs are already at risk. We would not wish one of the outcomes of covid to be a further tragic impact on those with disabilities.
Government mantras of “building back better” and “levelling up” can and should include people with disabilities and Down’s syndrome, making every aspect of society richly diverse and productive. I will conclude with a quote from a young lady, Kate Powell, which was provided to me by the Down’s Syndrome Association:
“Being a person with Down’s Syndrome makes me proud. I am a person to make a difference to a lot of people. That’s me. We may find things difficult, everyone does. We should tell people about Down’s Syndrome—the more people the better. Being a person with Down’s Syndrome I can do anything in life. We may need help to do the things we want to do in life. It is good to see people with Down’s Syndrome achieving their dreams. That’s my dream.”
That, Madam Deputy Speaker, should represent all our dreams.
The Minister for Care (Helen Whately)
I would like to thank the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) for securing this debate on this important topic, and also for her work as chair of the all-party parliamentary disability group. Thanks to her, we are marking Down Syndrome Awareness Month here in the House with this debate today, and I am truly pleased that we have this opportunity to celebrate the brilliant contribution that people with Down’s syndrome make to our society, and also all the work of the many people and organisations who support those with Down’s syndrome to live their lives to the full.
Today, the hon. Member has outlined some fantastic stories about the achievements of people with Down’s syndrome, and also their hopes and dreams. I would like to share Michael’s story with the House. Michael has Down’s syndrome, a visual impairment and the muscle condition hypotonia. Despite his family being warned by doctors that he would probably need a wheelchair for the whole of his life, Michael has represented Wales and Great Britain in the Special Olympics and he has won more than 60 medals, which is an incredible achievement. He has not let the pandemic stop his plans. Earlier this month, he ran his first marathon in support of Mencap. He ran through rain, wind and mud to complete the virtual route around his local area in Wales. I want to take this opportunity to extend my congratulations to Michael on such an outstanding achievement.
While Michael’s achievements stand out as an inspiration to us all, I also want to celebrate the everyday achievements and contributions that people with Down’s syndrome make to their families and our communities, and the contribution they make to employment through participation and through love, friendship and laughter, enriching all our lives. That said, people with Down’s syndrome still face too many challenges and barriers. I want to see a society that works for everyone, where everyone can participate fully, feel included and be free to be themselves, so I want to talk briefly about some of the work we are doing to ensure that disabled people, including those with Down’s syndrome, are enabled to live full and rewarding lives.
First, in education, our ambition is for every child, no matter what challenges they face, to have access to a world-class education that sets them up for life, and that absolutely includes children and young people with Down’s syndrome. Supporting children, young people and adults with special educational needs is a particular need for us at this time, and our aim, even during the pandemic, is that education, health and care continue as far as possible, so that children and young people with SEND get the provision and support they need to fulfil their potential and achieve their ambitions.
The hon. Member spoke about work and employment in her excellent speech. We want everybody to have the opportunity to participate in meaningful and rewarding work and to gain the life skills and rewards that come from doing that. I am sure she knows from her work on the APPG that the Government have several programmes in place to support disabled people. An example is the Access to Work grant, which enables employers to buy personalised and tailored support to help disabled people to move into and retain employment. I should also say that, during the pandemic, Access to Work has particularly strengthened its support by making greater use of assistive technology and supporting the transport of assistive technology from workplaces to homes to enable more disabled people to work from home.
There is also the intensive personalised employment support programme, which helps disabled people with complex needs who want to work but require specialist support to do so, and the Disability Confident scheme, which supports employers to have the confidence to recruit and retain disabled people. However, I will take away the hon. Member’s question about what specific support is available through the kickstart scheme for people with disabilities, and also her point about particular schemes for those with disabilities to start their own businesses.
I also want to talk about health inequalities. We had a brief exchange about the improved life expectancy for people with disabilities, particularly those with Down’s syndrome, but despite the increase in life expectancy, there are still health inequalities facing those with Down’s syndrome and also those with learning disabilities. For instance, they are more likely to experience premature mortality. The recent Learning Disability Mortality Review report stated that the life expectancy gap for those with learning disabilities is 22 years for men and 27 years for women. That is absolutely not right.
Bob Stewart
When I was born in 1949, the life expectancy of someone with Down’s syndrome was 12 years. The life expectancy now, we hope, is somewhere in the 60s or 70s. I am sure the Minister will agree that we have to find a way to employ these people properly, and not just because, as some people would say, they are disabled; in my view, they are not.
Helen Whately
I completely agree with my hon. Friend. I do know that those with Down’s syndrome are in employment, but let us continue to support that as one of the rewarding things for everybody to experience in life. As he said, life expectancy has indeed improved enormously, but I am ambitious and determined that we go further and make sure that we reduce health inequalities for people with disabilities.
Rachael Maskell
I appreciate that this is a really sensitive topic, but we know that coming into the world is a real challenge for somebody with Down’s syndrome. Will the Minister go away and look again at the conversations that are had with parents who are diagnosed in pregnancy with somebody with Down’s syndrome and see how we can change that conversation, so that people can understand the positivity of bringing up a child and raising someone into adulthood with Down’s syndrome?
Helen Whately
The hon. Member makes a really important point. It is clearly a very difficult and sensitive topic, but it is absolutely the case that if, during pregnancy, any abnormality is detected or suspected there should at no stage be any bias towards abortion, which is what, as I understand it, she is referring to. I want to make that absolutely clear. It must be the case that all health and care staff involved in the care of a woman or a couple who might be considering the termination of a pregnancy must adopt a non-directive, non-judgmental and supportive approach. That absolutely should be the case throughout our health system. Should anyone experience anything different and find that that is not the case, they should raise it, because women and couples should be supported in a positive way so that they can make the right choice for them. I am choosing my words carefully given that this is a very sensitive topic.
While I have the opportunity, I want to talk briefly about the importance of the Oliver McGowan mandatory training in learning disability and autism, which the Government have committed to rolling out to make sure that all health and social care staff receive training in learning disabilities and autism. That is really important to make sure that people with those conditions get the right and appropriate care when they are in the health and care system, including, I should say, for end-of-life care, making sure that do not attempt CPR—cardiopulmonary resuscitation—orders are used appropriately.
In the light of the pandemic, one thing that has been raised with me, particularly for those who are caring for those with disabilities, is the importance of day services and respite services. I have been working really hard, including with the Social Care Institute for Excellence, on guidance to support the reopening of day services and to encourage local authorities to make sure that those are reopened.
To conclude before we are out of time, I am so glad that we have had this debate and been able to talk about the contribution that those with Down’s syndrome make to our society, and, to use a phrase from the excellent speech by the hon. Member for East Kilbride, Strathaven and Lesmahagow, to have made our contribution to changing the narrative. It is crucial that we should celebrate the achievements and contributions of those with Down’s syndrome to our society, so we have been and are taking action to support those with disabilities, including Down’s syndrome, but I believe that we can always do more and go further. So I say, let’s do that. Let’s do more and go further to support people with Down’s syndrome to achieve their dreams.
Question put and agreed to.