Meeting date: Thursday, March 22, 2018
Meeting of the Parliament 22 March 2018
Agenda: General Question Time, First Minister’s Question Time, Down’s Syndrome Awareness Week, Major Infrastructure Projects, Fair Work, Parliamentary Bureau Motion, Decision Time
- General Question Time
- First Minister’s Question Time
- Down’s Syndrome Awareness Week
- Major Infrastructure Projects
- Fair Work
- Parliamentary Bureau Motion
- Decision Time
Down’s Syndrome Awareness Week
I ask those who are leaving the chamber to do so quietly, please.
The next item of business is a members’ business debate on motion S5M-10188, in the name of Johann Lamont, on Down’s syndrome awareness week. The debate will be concluded without any question being put.
That the Parliament recognises the importance of Down’s Syndrome Awareness Week, from 19 to 25 March 2018, in highlighting the contribution made by, and issues affecting, people with Down’s syndrome; understands that Down’s Syndrome Scotland is set to host a fundraising concert in Glasgow to launch the week; further understands that a number of young people with the condition are set to be commissioners and hosts for the forthcoming World Down Syndrome Congress, which is to be held in Glasgow in July 2018 where 1,200 delegates will visit the city, and wishes all involved the best for Down’s Syndrome Awareness Week.12:48
I thank colleagues from across the chamber for their support for the motion and for staying to attend the debate. Indeed, I have been struck by the number of people who have given their apologies for being unable to remain for the debate, but who support the issues that are being highlighted. I regard it as an honour to lead the debate.
Down’s syndrome awareness week presents us with the perfect opportunity to improve awareness, knowledge and understanding, and to help society to see past Down’s syndrome. The week ties in with the United Nations-recognised world Down’s syndrome day, which took place yesterday. It is therefore timely that we in this Parliament are joining the global efforts to advocate the rights, inclusion and wellbeing of people with Down’s syndrome.
Excuse me a moment, Ms Lamont. I ask those who are leaving the public gallery to do so quietly, please.
I am sure that I am not the only person who has been inspired by all the activities, on social media and elsewhere, highlighting the talents and abilities of people with Down’s syndrome.
I commend Down’s Syndrome Scotland for organising the special concert on Sunday evening that formally launched the awareness week and raised funds for people living with Down’s syndrome. I had the pleasure of attending the event and thoroughly enjoyed the show. I am also grateful for the information and advice that Down’s Syndrome Scotland provided in advance of the debate.
The key theme for this year’s awareness week is inclusion and employment. Employment rates for people with disabilities, including Down’s syndrome, are far below the national average, as opportunities for paid employment remain limited and the transition from education to the workplace continues to be a challenge. There is a need to better support the transition from education to employment, as well as to encourage employers and other partners to see a person’s abilities, not just their Down’s syndrome.
The prevailing stigma surrounding people with Down’s syndrome can result in low expectations, discrimination and exclusion, thereby creating communities in which people can find it difficult to integrate with others. The fact that there has been significant progress in attitudes from when I was a little girl is down to the work of families and people with Down’s syndrome to challenge people’s preconceptions. To move forward, we need to have families and people with Down’s syndrome at the centre of the process of changing policy.
Despite some progress, negative assumptions and discrimination persist towards people with Down’s syndrome. Misconceptions include outdated ideas that people with Down’s syndrome are always happy, that children with Down’s syndrome cannot attend mainstream school, that people with Down’s syndrome cannot read or write and that they cannot hold down a job.
Last year, Down’s Syndrome Scotland published a report entitled “Listen to Me, I have a Voice: Healthcare experiences of children and adults with Down’s syndrome and their families in Scotland”. It focuses on the experiences of people with Down’s syndrome with healthcare professionals and services. One of the recommendations is for all professionals to ensure that people with Down’s syndrome and their families are treated with dignity and respect through the use of people-first language.
People with Down’s syndrome are all unique individuals and each should be acknowledged as a person first and foremost. Down’s syndrome is only a part of a person. That is why we should always use people-first language—for example, instead of saying “a Down’s child”, we should say “a child with Down’s syndrome”. It has been argued that, by using the right language, we can help to raise awareness and challenge negative stereotypes of Down’s syndrome.
Good transitions are crucial to guaranteeing successful education and employment. Awareness week 2018 gives us an opportunity to raise the issue of transition for school leavers with Down’s syndrome. Down’s Syndrome Scotland indicates that it continues to receive feedback from families regarding the lack of support that too many encountered at that crucial time. “Nobody is aiming high for our kids,” says one parent, while another explains, “People need to feel they are useful.”
Successful engagement on transitions relies on establishing trust between young people, their parents and professionals. Trust cannot be achieved without good communication between all the parties involved. Transitions can lead to anxiety and loneliness for young people and their parents, who worry about the lack of opportunities.
Down’s Syndrome Scotland has indicated that it would welcome better data on positive destinations and better information about pupils who leave school. The organisation knows of some members who spent years at college and ended up with no job. Parents have also reported that, as the end of school approaches, they agree to whatever is offered to them because of a lack of options and the fear that, otherwise, their child will end up with nothing. That cannot be acceptable.
Down’s Syndrome Scotland does not think that those examples can be described as positive destinations and believes that the transition for pupils with Down’s syndrome should be better monitored and properly evaluated to assess the help that young people and their families receive at that critical time and to ensure that their progress and wishes are truly supported. I would be grateful if the Minister for Mental Health would reflect on that in her closing speech. If a positive destination is anything but that, it is essential that the Government acts to address that problem.
We all know how important work can be in giving people a sense of belonging and of contributing to their community. However, people with Down’s syndrome say that accessing paid employment remains a significant challenge. According to the Scottish Commission for Learning Disability’s research, the employment rate for people with a learning disability sits between 7 and 25 per cent, when Scotland’s national employment rate is 73 per cent. Why is that not a source of greater outrage to us all?
Down’s Syndrome Scotland believes that stronger actions are needed to challenge negative stereotypes in society and the workplace. We all have different abilities, and some young people with Down’s syndrome might need more support than others to access work. However, a requirement for additional support should not become a barrier to giving young people a chance to develop their skills and to contribute to Scottish society. It should be considered a right for all young people to achieve their potential. It is also essential to provide enough support to employers.
The world Down syndrome congress, which will take place in Glasgow in July, will bring together people who have Down’s syndrome, their families, carers, professionals and others who have an interest in their lives. A number of adults and young people with Down’s syndrome are preparing to be commissioners or hosts for the congress. They will play a vital role in ensuring that those who attend the event have a truly great experience. More than 1,200 people are expected to attend, and I am sure that everyone in the chamber will join me in wishing the organisers and volunteers the best of luck. Securing the congress is an amazing achievement for all those involved, and I am sure that the congress will make all the work worth while.
All year round, Down’s Syndrome Scotland and its members work tirelessly to tackle stigma and encourage greater inclusion in schools, the community and the working environment, which enables people to live, work and participate with confidence and independence. I hope that this afternoon’s debate helps to inform members’ understanding of the challenges that people with Down’s syndrome face when it comes to the transition from education to employment. I hope, too, that it leads us to reflect on what we can do to help people with Down’s syndrome to reach their full potential, and that we respond to their energy in bringing the issues that I have discussed to our attention.12:56
I thank Johann Lamont for securing debating time on the subject during Down’s syndrome awareness week, which provides an opportunity to highlight the societal contribution that is made by, and the issues that affect, people with Down’s syndrome in Scotland and beyond.
With approximately one in every 1,000 babies born with the condition, Down’s syndrome is the most frequently recognised form of learning disability. The condition occurs randomly at the point of conception and affects males and females alike. As Down’s syndrome is such a common feature of our society, this week also offers a chance to commend the essential services that are provided by the individuals and organisations across the country that work to improve the lives of people with Down’s syndrome.
Perhaps the most influential of those organisations in Scotland is Down’s Syndrome Scotland, which is a parent-led charity that was established in 1982 with the vision of creating a society that fully accepts people with the condition. It is currently the only charity in Scotland that is dedicated solely to supporting people with Down’s syndrome and their carers, and it provides all-through-life support across Scotland. With eight branches across Scotland, the charity provides constant support and a wide range of clubs and activities thanks to its dedicated volunteers, and it aims to assist families and individuals through fellowship and friendship.
The key theme for this year’s awareness week is inclusion in employment, which was selected because employment rates for people with disabilities fall far below the national average, as Johann Lamont indicated. Opportunities for paid employment remain limited and the transition from education to the workplace continues to be a challenge. Therefore, the transition must be eased and employers must be encouraged to see a person’s abilities and not just their condition.
Over the past few years, the Scottish Government has worked to improve the quality of life of people with Down’s syndrome through important strategies such as “The keys to life” and “A Fairer Scotland for Disabled People”, but recent reports show that more work is needed on implementation.
Eradicating stigma around Down’s syndrome is important. To do so, DSS recommended using people-first language that acknowledges individuals with Down’s syndrome as people first and foremost, rather than defining them by their condition.
All eyes will be on Scotland this July, when the SECC will host the triennial world Down syndrome congress, which will deal with topics such as experience, research and practice, widening opportunities and improving lives. The congress will bring together people with Down’s syndrome, their families, carers and others with an interest in their lives. Well over 1,000 delegates are expected to attend the four-day event. The congress will be a fantastic opportunity to highlight the progress that is being made internationally, and for those from different walks of life and diverse backgrounds to share their experiences.
Raising awareness of Down’s syndrome this week can take many forms, including wearing odd socks, holding a tea for 21 party, attending an awareness event, making a charitable donation or simply sharing a hashtag on social media. Online negativity and harassment might seem all too prevalent, but digital content that facilitates positive discourse can have far-reaching effects.
Just last week, two videos that shared a positive message about Down’s syndrome went viral. A video of five-year-old Chloe Lennon from Irvine, Ayrshire, has been shared more than 330,000 times across the world, racking up more than 10 million views. In the video, which was posted by her mum Jade, she explains that world Down’s syndrome awareness day is on 21 March, and she encourages people to wear odd socks that day as part of the lots of socks celebration. The video had an inspiring effect, with thousands of positive comments and messages flooding in.
In addition, a group of 50 mothers of children with Down’s syndrome collaborated on a “Carpool Karaoke”-style video to raise awareness and help change attitudes. The video, which is called “50 Mums | 50 Kids | 1 Extra Chromosome”, is being shared with the hashtag #wouldntchangeathing, and it carries a heart-warming and powerful message about disability, diversity and inclusion. One mother who participated in the project said:
“We wouldn’t change our children, but we want to change the world for our children.”
I am sure that any parent can empathise with that statement and, in a more universal sense, an increasingly inclusive society is something that we all ought to strive towards. As such, marking this week with debates such as this is incredibly important. The reaction to those videos is testament to the fact that visibility truly matters, and it proves that we must work together to ensure that our society reflects the needs of all.13:00
I also thank Johann Lamont for bringing this debate to the chamber, and I am grateful to have the opportunity to contribute.
Down’s syndrome is discussed as a disability. First, I want to highlight again that the word “disability” is a misnomer. Time and again, we are reminded of the contribution to our society that the so-called disability community make. For example, just last week we lost one of the greatest minds of our time in Professor Stephen Hawking, who no one could deny has had an astonishing impact on our understanding of physics, cosmology and our universe, no less. The winter Paralympics have just concluded, with athletes, including ones from these shores, performing at the highest level of physical and mental ability—ability that has been on show for all of us to marvel at. I have also been lucky enough to have coached athletes in Paralympic sport and the special Olympics—indeed, I still do—as well as so-called able-bodied athletes. They all train together in squad sessions, although there are individual nuances, because every athlete who I have ever coached is an individual with individual traits and abilities. Therefore, I respectfully suggest that we talk about “ability” not “disability”.
That gives me the opportunity to discuss local Ayrshire heroine Fiona Dawson, a young woman with Down’s syndrome. She is often seen by the side of the Prestwick swimming pool, where she volunteers as a swimming coach for children and adults. Fiona is a member of team GB’s Paralympic team and has travelled the world in pursuit of sporting excellence. She also works part time in an office and a shop, which means that, as was highlighted by Johann Lamont, she is in a minority, as only around 5 per cent of adults with learning disabilities are in paid employment.
It is entirely appropriate that, in Down’s syndrome awareness week, we take the opportunity to highlight that anomaly. Part of the issue is that employers are unaware that support might be available for them if they employ people who have specific needs. In that regard, Jeremy Balfour and I were invited to deliver a workshop in East Ayrshire to local employers that highlighted the many benefits of having a workforce that reflects society and the fact that someone’s having a so-called disability does not detract from their ability in the workplace. It was obvious that many employers in the room had a view of the disability workforce that was contrary to reality. I commend my colleague Jeremy Balfour for effectively changing the perception of many people in that room.
Fiona Dawson has spoken of her experiences, saying that the public are terrified of disability in general. She says that it is a label, and that it is hard for the public to find the person behind the label. That is what we are helping to tackle today in the chamber, and I would suggest that it is why this debate is so important. We need to show potential employers and the general public at large that we are all different and that we all have abilities and disabilities, some visible and some not. The ability to work and support oneself—which Johann Lamont highlighted—speaks to confidence, resilience and self-belief in every walk of life, and it is incumbent on us in this place to do all that we can to ensure that inclusion means exactly that and that any barriers, real or perceived, are removed.
I know that, now that she has qualified, Fiona Dawson would like to follow her voluntary work as a swim coach with a position that affords her a paid coaching position. She has an obvious talent that should be deployed to the best of her ability to the benefit of society as a whole.
I will end where I started by stating that the discussion should always be about ability, not disability. We owe it to the around 750 babies a year who are born with Down’s syndrome, just as we owe it to every other person, to ensure that they have an equal opportunity to explore their talents and passions to the very best of their abilities and to make the contribution to society that they surely can.13:04
I, too, congratulate Johann Lamont on bringing this important debate to the chamber and on her excellent speech.
I am sure that many members are aware that, historically, the treatment of those with Down’s syndrome and their families makes for upsetting reading, sadly. Because of the lack of knowledge and understanding of the disorder, the medical recommendation to parents throughout the 1960s and even in the 1970s was for children who were born with Down’s syndrome to be institutionalised. Wherever possible, care in the community is now encouraged for most conditions, but the transformation in public attitudes to Down’s syndrome is thanks to the brave and determined parents who have championed the rights of their children over the past decade and who continue to do so. Organisations such as Down’s Syndrome Scotland also do fantastic work in changing perceptions of what a life with Down’s is actually like. That life can be truly fulfilling. It has challenges, but what life does not?
Throughout this week, there have been numerous stories of families and inspiring individuals who live and thrive with Down’s syndrome. The journalist Jamie McCallum wrote in the Sunday Herald that, despite what he first expected when his daughter Rosie was born, his family is more like other families than different from them.
This week of awareness of the condition is a wonderful opportunity to celebrate individuals who have Down’s and to appreciate how far we have come as a society. That is not to say that there is not much more work that could be done. Although much more information is available to parents than there was in the 1960s, we must ensure that it is adequately communicated.
Down’s syndrome can come with various disabilities and increased likelihood of health problems, including heart conditions, visual impairments and thyroid problems. Equipping parents with information about those possibilities and how to handle them is essential to ensuring that every Down’s child has the best possible start in life. It is crucial that our health professionals are able to advise parents and point out where care is available. That is especially so in rural areas such as the Highlands and Islands, which is my region, where there is often limited access to specialised care.
Organisations such as Down’s Syndrome Scotland provide vital networks for families and young people to connect with and support one another. Members have referred to the world down syndrome congress, which will take place in Glasgow in July. That is a fantastic example of such networking, and I am encouraged to hear of the opportunities for Scottish young people to participate as commissioners and hosts.
Many support organisations have grown from the grass roots out of necessity. Parents share their experiences with one another to fill a gap. Gaps will only widen while local services and support suffer under austerity. The dramatic drop in additional support needs teachers in our schools—there has been a 15.9 per cent fall in the past five years, despite rising needs—is a prime example that we cannot just shrug off. A lack of support in education will impact on children with Down’s now and in later life.
Early intervention is important, but often the focus is solely on the care and support that families are given. With improvements in healthcare and treatments, the life expectancy of those with Down’s is increasing, as it is for all the population. It is right that those who live into their 60s and 70s naturally seek more out of their lives. Therefore, there are serious questions to be asked about how we can support individuals with the condition in adult life.
Despite changing public attitudes, individuals with Down’s will face a real employment gap, as Johann Lamont stated in her speech. Many find it difficult to find long-term and secure work. That is in the face of evidence that individuals with Down’s make valuable team members. We need employers to take responsibility for encouraging the potential of those with learning disabilities and offering them real opportunities. After all, as the American educator and businessman Stephen Covey said:
“Strength lies in differences, not in similarities.”13:08
I echo members’ thanks to Johann Lamont for securing this important debate. I am grateful for the opportunity to speak in it. I love the fact that the gimmick for Down’s syndrome awareness week is to wear odd socks. It turns out that I have been marking Down’s syndrome awareness week every single day of the year.
We must recognise the importance of such events and of helping society to see past Down’s syndrome, as the wider narrative around the week goes. I will come to this year’s theme of employment, but I want to stay for a moment on the idea of getting society to see past Down’s syndrome. I have always seen great industry, creativity and compassion in every one of my friends and co-workers and the people with whom I am acquainted who have Down’s syndrome. They have a capacity for romance and great humour.
In this awareness week, we should all remember that those who live among us with Down’s—our neighbours and friends—represent a different kind of normal. However, society is rigged differently and does not recognise that different kind of normal, and the reason why we are here today is to challenge that.
From conception, the odds can be stacked against people with Down’s syndrome. To stray into a slightly sensitive area, I do not for a minute want to challenge a parent’s decision not to proceed with a pregnancy when Down’s is detected—that should always be their right—but that should not be the default assumption of medical staff who offer advice at the time. We need to equip medical staff with an understanding of the way to speak to parents at that difficult time of decision making and scotch the idea that Down’s is somehow a life sentence. I am grateful to my constituent Lynn Murray, who has done a lot of research and has worked with the medical profession on managing those conversations. We need to challenge stigma at every single stage of life for someone with Down’s; we must also challenge the assumptions that we have all paid into at some point through popular culture.
It is right that the theme of this year’s awareness week should be inclusion in employment, because the aspiration of every family with somebody affected by Down’s syndrome is independent living, and employment is the absolutely central pillar in the ability to live independently. With employment, people can have a social network, feelings of self-worth and fulfilment and financial independence. There are very few tenets of society to which we all aspire, but that is absolutely one. As an MSP for a constituency in our nation’s capital, I am proud of the many businesses and social enterprises that go out of their way to recruit not just people with Down’s syndrome but those with other learning difficulties. For many years, I worked alongside people in the Engine Shed, just up the hill from here, which was a great social enterprise that worked in particular with people with Down's syndrome.
For those with any learning difficulty in our society, a parlous postcode lottery is attached to support. Families sometimes do not get the support that they need to help their children who have Down’s syndrome through the transition that we have heard about and into employment, which is the theme of this year’s awareness week.
I again thank Johann Lamont for bringing the debate to the Parliament, as it is absolutely vital. It is also vital that we do not just mark Down’s syndrome once a year through the awareness week but that we keep it in our minds in everything that we do in the Parliament. As I said at the top of my remarks, having Down’s syndrome and living with it are just a different kind of normal.13:12
Nobody could fail to be moved by the video that was released earlier this week of 50 mums doing carpool karaoke with their precious children. They were full of life and fun, singing along by lip syncing or using Makaton. That video gives a little glimpse into families with Down’s syndrome—the enthusiasm and laughter, and the tears and frustrations. It shows the reason why world Down’s syndrome day is so important, which is that it teaches the rest of us a little bit more about Down’s syndrome and all that comes with it.
Direct experience makes all the difference in the world. Jamie McCallum, an individual who helped to create that video and whose daughter Rosie was born with Down’s syndrome five years ago, wrote that that experience transported him
“from spouting liberal platitudes on the periphery to centre-stage first-hand experience of the major shifts against society’s most vulnerable in recent years.”
That is the significance of Down’s syndrome day. It gives parents a platform to talk about the reality.
Over the past few decades, there have been huge changes. In the 1970s, when my uncle was born with Down’s syndrome, my grandfather was told not to worry because there were places that would take my uncle, so he did not need to put up with him. That was only 40 years ago. We have gone from a situation in which people with Down’s syndrome had a life sentence in an institution to their now living very full lives. The hashtag for the video of 15 mums doing carpool karaoke was #wouldntchangeathing. That is so true. My uncle celebrated his 50th birthday last year—he has just passed his 51st. Life expectancy was probably into the mid-20s 40 years ago. Now people are expected to live to 60 and beyond. At the turn of the century—in the 1900s—life expectancy was nine years. Huge progress has been made.
Attending my uncle’s 50th birthday party, which Alexander Stewart was also at, was incredible fun, as is just spending time with my uncle and his friends, who also have Down’s syndrome. They are unpretentious and happy, and could teach us so much about love and about care.
It is not always happy, but despite that, 97 per cent of families who have a family member with Down’s syndrome say that they are far happier for having the condition in their lives. That is why—and I say this very carefully—it is heart-breaking that the figure for terminations of babies with Down’s syndrome is 94 per cent. To quote Jamie again, that means that
“94% of people are opting out of something that has a 97% chance of making them happier.”
There is so much more work to do in raising awareness of what life is really like with Down’s syndrome. People do not suffer it: people have Down’s syndrome. We need to improve counselling and guidance for parents who face that difficult choice—and I do not underestimate the difficulty of the choice—and then support parents and families and people with Down’s syndrome through all the ups and downs, the highs and lows, and the opportunities and challenges.
We think that we are wise, normal and fine, yet we are shamed by people who are happier, more loving and arguably more normal than those of us who work and strive and stress about absolute trivia. My uncle is always ready with a smile and a handshake—often while the rest of us cringe, wanting the ground to swallow us up—as he goes up to thank the staff at a restaurant or whatever for their service. He does not believe that there can be anything bad in anybody in this world. That is a far more normal state to be in than the normal that we claim.13:17
I am delighted to be able to participate in this debate and I congratulate Johann Lamont on securing it. As we have heard, we are here to recognise the importance of Down’s syndrome awareness week, and awareness should indeed be encouraged beyond the many promotional activities.
I am always proud to highlight the contribution that is made by, and the issues that affect, people with Down’s syndrome. It is what they can do and not what they cannot do that we should focus on. They want employment, they want to go to college and they want to engage their talents. Unlocking their potential gives them the opportunity to develop their self-esteem, independence and commitment, and we should do all that we can to support them in doing that.
Over the past 20 years, it has been my privilege to have worked closely with a number of organisations that are actively involved with individuals with Down’s syndrome. Those groups value their roots in civil liberties and rights for individuals, and they benefit people living with all types of learning difficulties and disabilities.
I have a special relationship with Down’s syndrome through my association with Ark Housing Association, which is a not-for-profit organisation that helps individuals who have learning difficulties. It has 400 properties across 13 local authorities and it employs about 1,000 staff. They support people who require assistance at home and in their community, enabling them to live good lives. The people whom they help, many of whom have Down’s syndrome, get the chance to make choices. They want chances and opportunities within their lives to work, to be included and to support others. We should do all that we can to enable that, because they can make a massive contribution to the communities that they live in and represent. Ark provides them with care and support to ensure that they can unlock their potential, and it was my privilege to see that potential unlocked in many individuals, including Kate Forbes’s uncle.
The second organisation that I have been involved with is the Stepping Stones theatre company, which is a highly acclaimed drama group that works across Perth and Kinross. I had the privilege of chairing that organisation and I still attend many of its events. Drama, dance and performing help in so many ways and the company is full of many stars who light up the stage with their amazing performances.
Down’s syndrome is the most frequently recognised form of learning disability. Approximately one in every 1,000 babies worldwide is born with Down’s syndrome. As has been said, the disease has developed, and individuals live longer and contribute more. In the past, Down’s syndrome might have been seen as a life sentence for the family, but now it is seen as much more. Down’s is life changing and it does not have a cure, but there are myriad ways to ensure that each individual person who has Down’s syndrome is afforded the type and level of support that they need to develop their full potential.
The events that are taking place across Glasgow and the event that will take place there later in the year when the world Down syndrome congress comes to Glasgow are fantastic. They will give people a platform and give us an opportunity to stand up and be recognised in support.
I believe that everyone should have the opportunity to lead a happy, healthy and safe life, whatever their individual circumstances. I have truly been inspired by many individuals with Down’s syndrome whom I have had the opportunity to work with over the years. I encourage everyone to take the time to become a friend of a person who has Down’s syndrome, because it will be a truly enlightening experience such as the ones that I have enjoyed.13:21
I thank Johann Lamont for lodging her motion, which brings Down’s syndrome awareness week to our attention today, and I thank members across the chamber for their speeches in what has been an important debate in raising awareness of Down’s syndrome.
I thank Gillian Martin for her motion that congratulates the Francis family from Turriff on raising more than £1,000 for Down’s Syndrome Scotland by hosting a coffee morning in the town. I say well done to the Francis family.
I also thank Ruth Maguire for her motion that congratulates five-year-old Chloe Lennon on her outstanding achievement in being selected as the UK ambassador for the US-based charity Nothing Down. Chloe and other ambassadors hope that people all over the world will wear odd socks for world Down’s syndrome awareness day as part of the lots of socks celebrations. We all wish Chloe the very best for the future.
This morning, I was at Ayrshire College in Kilmarnock where, just last week, the college’s Loren Gemmell was awarded the National Union of Students Scotland student of the year award. Loren is a stunning example of what can be achieved by someone with Down’s.
Today, we celebrate Down’s syndrome awareness week by focusing on the theme of inclusion in employment. We recognise the variety of events that are under way this week and congratulate all who are involved. I offer my personal thanks to Down’s Syndrome Scotland for hosting Down’s syndrome awareness week and for all its work in supporting families and people with Down’s syndrome to reach their full potential. As David Stewart highlighted, the organisation does so much to highlight and signpost families and individuals to the support and opportunities that are available for those who have Down’s.
As the minister responsible for the learning disability portfolio, I have been privileged to hear of the valuable contributions that people who have Down’s syndrome make across civic Scotland in areas such as sport, culture, transport and education. People who have Down’s syndrome want to contribute in all areas of life.
Like Kate Forbes, I was personally aware of Down’s syndrome from a very young age as one of my mum’s cousins was a woman with Down’s. She lived to the age of 60 and died within the past 10 years. However, like Kate Forbes’s uncle, she brought joy and laughter to our lives.
Down’s syndrome is the single biggest cause of learning disability. We have heard of the significant improvements in the lives of people with learning disabilities. Moving beyond our shameful past of Victorian care to value the contributions that people who have Down’s syndrome make, we have made vast strides in achieving change. However, work still needs to be done. As the delivery period of Scotland’s learning disability strategy, “The keys to life—Improving Quality of Life for People with Learning Disabilities” reaches its halfway stage, there is a once-in-a-lifetime opportunity to realise transformational change as the first generation of young adults with learning disabilities since the closure of the last long-stay hospitals in Scotland come of age. How we respond to that opportunity will influence the fortunes of future generations.
I could not agree more with Johann Lamont about the need to have better transitions between primary and secondary school, and between that stage and the world of employment. Despite “Principles of Good Transitions 3”, Down’s Syndrome Scotland and others have noted the lack of support, which is why the Scottish Commission for Learning Disability set up the employment task force following its employability report.
People with Down’s syndrome have the same aspirations as everyone else, and they should have the same opportunities. I believe that the transformational change that we need will happen only if a whole-system, whole-population and whole-person approach is taken. That is why my officials are working with Ms Freeman’s officials, who are responsible for the fairer Scotland disability delivery plan, and a range of key partners including Down’s Syndrome Scotland to set out the Government’s ambition for the next phase of delivery of “The keys to life”. Achieving that ambition will require concerted effort across a range of policy areas.
I acknowledge the conversations that the minister is having with Jeane Freeman, given her responsibilities, but will she outline what conversations she has had or what discussions are on-going with the minister who is responsible for employment and fair work? There is a big issue about challenging employers on their responsibilities and ensuring that our thinking on employment and fair work includes consideration of the rights and entitlements of people with disabilities.
Johann Lamont is absolutely right, and we are having those conversations. I think it was Johann Lamont who mentioned the importance of reducing stigma among employers and others in order to give people the life chances that they need. For example, Loren Gemmell is studying marketing, but are employers going to see her marketing skills rather than her Down’s? That is the challenge for employers.
Every person in Scotland with a learning disability, including those who have Down’s syndrome, has the right to lead a meaningful life. However, despite the improvements in the lives of people who have Down’s syndrome, we know that many people experience the negative stigma that still exists. It is crucial to recognise that Down’s syndrome is only part of a person and that people first language, which Johann Lamont also talked about, should always be used. A child with Down’s syndrome is a child first and foremost.
During July this year, as Alexander Stewart and others mentioned, Scotland will host in Glasgow the 13th world Down syndrome congress. Led by Down’s Syndrome Scotland, the congress will offer a unique environment for people to share experiences and learning with families from all over the world. The event will enable families to feel part of a global community and connect with people from diverse cultures, backgrounds and communities who face similar challenges and concerns to their own.
The most recent triennial congress was held in Chennai, India, during 2015, and a team from Down’s Syndrome Scotland travelled to Chennai to promote the congress in Glasgow and take part in the official handover ceremony. During the ceremony, a film of the First Minister being interviewed by Andrew Maclntyre, a man with Down’s syndrome, was shown. Andrew is one of the three leading commissioners in a team of 12 commissioners, all of whom have Down’s syndrome and all of whom are participating in a specific training programme funded by the Scottish Government in the lead-up to the congress.
Earlier this week, the commissioners ran training sessions for more than 250 participants from Glasgow’s taxi and hospitality sectors, with a further 150 being expected to participate in future sessions before the congress takes place. An estimated 1,250 delegates are expected to attend the congress. People who have Down’s syndrome will be supported to be involved in all aspects of delivery of the congress.
Yesterday, on 21 March, we marked world Down’s syndrome awareness day—a symbolic date reflecting the scientific advances in understanding the causes of Down’s syndrome. During 2012, the secretary general of the United Nations stated:
“On this day, let us reaffirm that persons with Down syndrome are entitled to the full and effective enjoyment of all human rights and fundamental freedoms. Let us each do our part to enable children and persons with Down syndrome to participate fully in the development and life of their societies on an equal basis with others. Let us build an inclusive society for all.”
Let us, across the chamber, echo those words today and reaffirm our commitment in this Parliament to work together to achieve transformational change in the lives of each and every person in Scotland who has Down’s syndrome, committing to seeing every person as a person: as an individual with talent and a valuable contribution to make.13:32 Meeting suspended.
14:30 On resuming—