Meeting of the Parliament

Meeting date: Tuesday, March 18, 2014

Official Report 806KB pdf

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Down’s Syndrome Awareness Week

The final item of business is a members’ business debate on motion S4M-08971, in the name of John Wilson, on Down’s syndrome awareness week 2014. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that 21 March 2014 is the UN World Down’s Syndrome Day that aims to raise awareness of the condition caused by extra material in chromosome 21; understands that Down’s syndrome is the most frequently recognised cause of learning disability; considers that World Down’s Syndrome Day and Down’s Syndrome Awareness Week, 17 to 23 March 2014, are opportunities for people throughout Scotland, including Central Scotland, to reflect on the value of people with learning difficulties in Scottish society; understands that Down’s Syndrome Scotland’s vision is that society fully accepts and includes people with Down’s syndrome; considers that the charity supports its members with Down’s syndrome to achieve their full potential; welcomes the Communication Skills Project currently run by Down’s Syndrome Scotland and being evaluated by the University of Strathclyde; understands that this pilot project aims to help children from 12 months to improve their communication skills and upskill parents in supporting their children’s speech and language, complementing speech and language therapy sessions; acknowledges the wide range of issues likely to affect people with Down’s syndrome at different stages in their lives, including screening, education, employment, independent living or dementia, and recognises the importance of early intervention to ensure the best quality of life for people with Down’s syndrome.

17:03

I thank the members across the chamber who signed my motion and who are here this evening. I welcome to the gallery those from Down’s Syndrome Scotland.

In many ways, this is a timely debate because it acknowledges the important date of 21 March as the United Nations world Down’s syndrome day and recognises that it is Down’s syndrome week from 17 to 23 March 2014.

The charity Down’s Syndrome Scotland provides support and services to people with Down’s syndrome. It recently won the public choice award at the Scottish adventure awards. It is vital that Parliament raises awareness of Down’s syndrome among the wider public and looks at the approach so that the quality of life for everyone with a learning disability is improved.

Down’s syndrome affects approximately 20 per cent of the learning-disabled population and is the single biggest cause of learning disability. The chance of a woman conceiving a child with Down’s syndrome increases with age, but 80 per cent of children with Down’s syndrome are born to women who are younger than 35. Nearly one in every 1,000 babies who are born in Scotland will have Down’s syndrome. The charity Down’s Syndrome Scotland thinks that more work should be done on screening and maternity care, so that people can make informed decisions.

The thrust of this week’s campaign is about people living their lives to the full and achieving their full potential. There are a lot of misconceptions out there about Down’s syndrome. Life expectancy has increased significantly over time, and there are people with Down’s syndrome who are 60 and older. Down’s is a lifelong condition, which cannot be cured, but it is vital that we recognise that many children who have the condition attend mainstream education. The campaign is essential in offering serious balance as it engages with wider public perceptions about Down’s syndrome.

Adults with Down’s syndrome can and do live independently and are productive in the workforce, although in the current economic climate it remains difficult for people with the condition to find employment. The contribution of people with learning difficulties is not in doubt, but more needs to be done to encourage employers to take people on. It is clear to me that a lack of employment can only erode the confidence of people with Down’s syndrome, especially younger members of society. It is important that the Scottish Government considers how to make apprenticeships more accessible to young adults with Down’s syndrome.

Down’s Syndrome Scotland offers valuable support to families in central Scotland. Its central Scotland branch, which is based in Falkirk, is organising an open day at Grange community centre on Saturday 22 March. Members, carers, parents and siblings will no doubt be present that afternoon.

Much more can be done. The recent changes in the welfare benefits system have not been helpful, to put it mildly. No doubt tomorrow’s budget will bring more of the same, with more caps on benefits. Current changes have meant that individuals are required to do more to prove their incapacity, and many parents do not think that that is a useful approach for people who are born with a condition such as Down’s syndrome. We should remember that behind the welfare cuts are human faces.

Through Down’s Syndrome Scotland’s communication skills project, which is being evaluated by the University of Strathclyde, communication skills workshops have been set up in Edinburgh, Glasgow, East Kilbride, Perth, Aberdeen, Inverness and Orkney, providing support to 84 families. I recognise the good work that Down’s syndrome charities are doing throughout central Scotland and beyond. Such work relies on funding being available for services and organisations that help and support families. We should ensure that services are maintained and that the best possible opportunities are offered to people in Scotland who live with Down’s syndrome.

A number of people in Scotland who have Down’s syndrome play an active part in society. There are people who have moved through the education system and who have even been elected to represent their communities. If they are given skills and opportunities, many people with Down’s syndrome can play an active part in society. The Minister for Children and Young People told me that she recently visited the Ups and Downs Theatre Group, which is based in Motherwell but performs in Hamilton. I know that many individuals with Down’s syndrome get involved in acting. I also know that the Chryston and district pipe band’s pipe major has Down’s syndrome.

There is nothing to stop people with Down’s syndrome becoming actively involved in their communities. It is wider society that prevents many of those people from playing an active role. As I said earlier, it is the perceptions among many members of the public that hinder those individuals. As a society, we have to think about how we treat people with Down’s syndrome and how we give them the opportunity to play a full role in society.

I reiterate the point that I made about employment opportunities. I make a plea to the minister about the opportunity for people with Down’s syndrome to get apprenticeships to allow them to move into full employment. As I indicated, some individuals who have been diagnosed with Down’s syndrome are living to 60 and beyond, and they can play an active role in society. We have to move forward and recognise that we should give them every opportunity to participate in society.

It is significant that Glasgow will hold the world Down’s syndrome congress in 2018. I hope that everyone in this chamber, and everyone who is listening to this debate, will take forward the case for ensuring that individuals with Down’s syndrome do not feel persecuted, are not held back and are given every opportunity to move forward.

17:11

I congratulate John Wilson on bringing the debate to the chamber, and I take the opportunity to thank Down’s Syndrome Scotland for the work that it does and for the briefing that it provided ahead of today’s debate, which I found helpful.

I want to focus my speech on two little girls who have had an impact on my life at different stages. Seventeen years ago, a little girl called Abigail entered my family’s life. My parents had signed up to Barnardo’s Scotland’s home from home respite service and, as a result, became respite care providers to a local family whose four-year-old daughter, Abigail, had Down’s syndrome. I freely admit that at that time, as a teenager who was still at secondary school, I was not knowledgeable about Down’s syndrome. However, from interacting with Abigail on the occasions when she would come to visit our family, I learned that people with Down’s syndrome are as capable as any of the rest of us of living life to its fullest and enjoying life to its fullest, when they are given the opportunities to do so.

Abigail now lives in Devon, has attended college, and turns 21 next month. My parents will be going down for her 21st birthday party, having already attended her 18th. Thanks to the advent of social media, I am able to keep in contact with Abigail once again, despite the fact that she has moved away from my area.

The second little girl whom I would like to talk about is called Poppy. Her mum, Debra, is my wife’s friend, and the family live not far from us in Aberdeen. Debra did not know that she was having a Down’s syndrome baby. The blood test did not show her as having the one in 150 risk that would then allow further diagnostic screening to take place. I realise that the national health service guidance says that that blood test should not be taken as an absolute and that the fact that a woman is not shown as having the one in 150 risk does not eliminate the potential that her child might be born with Down’s syndrome. What it means is that a post-natal diagnosis is required.

Poppy is a delightful and happy girl, who attended nursery with my son—they were Joseph and Mary in the Seaton nursery’s nativity play. Poppy has gone to the local primary school—Dyce primary school—which is a mainstream place of education. That emphasises the point that John Wilson made and which was highlighted by Down’s Syndrome Scotland in its briefing, which is that many children with Down’s syndrome attend mainstream schools. Although that is obviously apparent to parents of children who attend school alongside a child with Down’s syndrome, wider society perhaps does not recognise that the opportunity for mainstream education is as open to children with Down’s syndrome as it is to any other child.

I have noted the work that Down’s Syndrome Scotland has been doing, because Poppy’s mother Debra has done some fundraising for the organisation. She is among many people who value the support that it provides to families.

I note the 2018 congress, which John Wilson highlighted, and I note the range of subjects that will be included among the discussions at it. The congress is a fantastic opportunity to highlight the work that is being done internationally and to learn and give lessons about Down’s syndrome internationally.

I entirely agree with John Wilson that we all need to work together. I commend the work of Down’s Syndrome Scotland. My experiences will ensure that I will continue to do my bit to share the knowledge that I have gained and to challenge the myths that Down’s Syndrome Scotland has highlighted so that we give the best possible opportunities in society to people with Down’s syndrome.

17:16

I congratulate John Wilson on securing the debate during Down’s syndrome awareness week. I join him in applauding the work of Down’s Syndrome Scotland—both the general work that it does every day of the year and its success in bringing the world Down’s syndrome congress to Scotland in 2018. It is a laudable achievement on the part of Down’s Syndrome Scotland to bring a worldwide community together. It shows the commitment that we in Scotland have to improving inclusion and support for disabled people. By its very nature, the bid was inclusive from the start, as it was led by Andrew Macintyre, Stuart Campbell and Sam Ross, each of whom has Down’s syndrome. They are members of the host group, Down’s Syndrome Scotland, under the banner, “People make Glasgow inclusive.”

The previous congress was held in Cape Town in 2012, and was the 11th to be held by Down Syndrome International. The large number of self-advocates who attended the event was notable. That should be encouraged as far as possible at the Glasgow event, because it offers a unique opportunity to learn from best practice and to gain a greater understanding of how our services can be made more person centred. The basic need to live independently and with a degree of self-advocacy is a common theme of discussions with disabled service users, and it is right that that be viewed within the context of human rights.

Down’s syndrome is the most frequently recognised form of learning disability, with approximately one in every 1,000 babies in Scotland born with the condition. It occurs randomly at the point of conception in both males and females. As it is such a common feature of society in Scotland and throughout the world, it is important that groups such as Down’s Syndrome Scotland be recognised as providers of essential services. As John Wilson pointed out, the work that the organisation does in supporting families and individuals is commendable.

As its website points out, Down’s Syndrome Scotland is a mere team of three, and they are in high demand. The number of inquiries that it has received has grown continually over the past financial year, with a 97 per cent increase and more than 400 inquiries from professionals. There have been a further 600 parent inquiries, which shows that parents are increasingly becoming aware that help is out there to ensure that they and their child receive the optimum level of support. The expertise and support that is delivered includes training sessions for support staff, teachers and health workers, provision for lectures and seminars, formal visits to schools to improve understanding, and on-going support groups for carers, children and parents.

That information is crucial because there are still many misconceptions about the nature of the disability and why it occurs. As John Wilson mentioned, Down’s Syndrome Scotland points out in its fact sheet that

“Although the chance of a woman having a child with Down’s syndrome increases with her age at the time of conception, 80% of children with Down’s syndrome are born to women younger than 35”.

So much of the service that is delivered is aimed at giving greater control to the individual and at helping them personally to understand the condition, so that they can manage it effectively throughout their lives. Improving the individual’s ability to communicate verbally is a key part of that. Helen Hayes of Down’s Syndrome Scotland points out that

“speech characteristics and poor short-term memory limits language learning. Their understanding tends to be better than their production of language, which can include stuttering and talking too fast.”

The charity now runs a pilot scheme in Glasgow, where parents and carers can bring children to meetings and pick up new strategies for communicating more easily. That has a huge impact on the emotional wellbeing of both carers and children, and it improves their relationships. The charity also runs workshops across the country, where attendees are given a programme of five sessions with language development experts, which gives them the tools to identify the unique difficulties that their child faces.

In 2012 the United Nations recognised world Down’s syndrome day on 21 March. The date is significant as it represents the three copies—March being the third month—of chromosome 21, which people with Down’s syndrome have.

Down’s Syndrome Scotland will this year—as it has done for the past several years—run its “do a dish for Down’s syndrome” campaign, where family, friends and co-workers meet and bring self-prepared food in a celebration of diversity. Over the years it has been successful in bringing people together and I am perfectly sure that Down’s Syndrome Scotland will find the same enthusiasm in communities during this awareness week.

I welcome the motion and look forward to seeing further positive steps towards inclusion, both this year and every year until 2018, when the eyes of the world will again be on Glasgow.

17:20

I add my voice to those who have congratulated John Wilson on lodging the motion, particularly as the debate is taking place at the start of UN world Down’s syndrome awareness week.

I would be surprised if a single member in the chamber or anyone in the public gallery—or indeed in communities throughout Scotland—was unfamiliar with the condition known as Down’s syndrome.

Despite being something that has always existed, and despite research by John Langdon Down in the mid-19th century, until relatively recently people with Down’s syndrome were severely stigmatised. Indeed, they were often institutionalised and, in the extreme case of Nazi Germany, they were the victims of genocide.

Thankfully, times have moved on. I commend the fact that Down’s Syndrome Scotland recently celebrated its 30th birthday. I congratulate the charity on the enormous support that it has provided across Scotland for people with Down’s syndrome, their families and the professionals in the field.

Branches of Down’s Syndrome Scotland stretch from Grampian to Tayside and Fife, from Edinburgh to central Scotland and across to the west and Ayrshire. Each local group is active in assisting individuals and families in their communities.

I was interested to read about the communication skills project, which is highlighted in the motion, which is assessed by the University of Strathclyde and is looking at ways to improve speech and language abilities in children as early as possible. As with so many areas in medicine and support services, early intervention is often the key to providing successful help for people with Down’s syndrome to realise their potential. That is essential in the early years, when children need such support to improve their communication skills, which in turn will help them to learn at a faster rate.

Another area that requires greater emphasis—and one in which Down’s Syndrome Scotland is leading the way—is continuing professional development for professionals, such as teachers, health visitors and midwives. As the old adage says, one is never too old to learn new skills. By providing those tools through accredited courses, a greater understanding of Down’s syndrome can be gained.

The time available to me this evening does not allow me to cover every aspect of the tremendous work that is undertaken by Down’s Syndrome Scotland, but I would like to mention the subject of screening. Advances in this field have ensured that women and their partners have access to the appropriate information in terms of explaining the difference between screening and diagnosis and discussing the options available. Pre-diagnostic support for pregnant women to make them aware of the possibility of having a baby with Down’s syndrome should be more widely available.

Similarly, there has to be postnatal care in hospital for parents of babies born with Down’s syndrome. Such things as Down’s Syndrome Scotland’s baby packs in maternity units should be part of the overall level of support that is provided for parents who are made aware of their child’s condition.

Thankfully, the number of terminations following a prenatal diagnosis of Down’s syndrome has fallen in England and Wales. I do not have the figures, but I imagine that the trend would be the same in Scotland.

I want finally to touch on the involvement of people with Down’s syndrome in culture and the media. I very much welcome the fact that actors with Down’s syndrome—who are often very talented—now play roles in mainstream television programmes such as “Eastenders”, “Holby City” and “Upstairs Downstairs” and in films such as “Notes on a Scandal”. However, it has taken far too long to achieve such involvement. Culture should represent society and, given that people with Down’s syndrome are obviously part of society, they should be playing a part in our media. Perhaps that is a key component of ending the stigma of Down’s syndrome.

As a member for North East Scotland, I hope that Down’s Syndrome Scotland’s charity dinner—called Scotland with soul—in Aberdeen this Friday, which will include music, dancing, an auction and a raffle, is a great success.

I thank John Wilson again for bringing this issue to the chamber and I wish all those involved in Down’s syndrome awareness week every success in raising awareness of this common condition and helping those affected achieve their full potential as equal and active members of Scottish society.

17:25

I add my congratulations to John Wilson on creating the opportunity for us to debate this important subject.

It is particularly interesting that, when I was a youngster, if someone was a Down’s child they were institutionalised or they stayed with their family; they were written off at the outset. The assumption was that there was nothing there worth worrying about. Now, in the modern age, we know that we have consistently underrated the potential of children with Down’s syndrome. Indeed, it is worth looking at the range of achievements of many with Down’s syndrome, which is probably nearly as great as it is for people without Down’s syndrome. There is considerable overlap. Many people with Down’s syndrome achieve at higher levels than many who have no measurable impairment of any kind, which is to be welcomed.

My mother was a visitor at the local psychiatric hospital, Stratheden hospital. Like many hospitals in the 1950s and 1960s, it had people in it who were there because they had been abandoned by their families, which included people with Down’s syndrome. Each fortnight my mother took a couple of people from Stratheden out for tea, one of whom was a Down’s syndrome patient. In the modern context “patient” is the wrong word, because being a patient means that you are being treated, whereas the reality was that the woman concerned had been dumped in an entirely inappropriate setting. We have to be very grateful for the changes that have meant that the way in which people with Down’s syndrome are treated is now different.

Another difference is that when my mother did that, 50 years ago, someone with Down’s syndrome might have reasonably expected to live into their 30s. Now very often they live into their 60s. That is great news, of course, but it can also be a source of worry that did not previously exist for parents. Children with Down’s syndrome are living beyond their parents’ lifespan and their parents quite properly have many concerns about their children’s ability to survive independently in the world after they have departed it. However, if we diagnose and support children with Down’s syndrome we can create an independent capability in them.

We have heard reference to people with Down’s syndrome acting. The earliest example of that that I remember was in an episode of “A Touch Of Frost”, the theme of which focused on society’s inappropriate view of the capabilities of someone with Down’s syndrome. I welcome the fact that the mainstream media is providing opportunities for people with Down’s syndrome to be part of theatre and also using theatre and television drama as a way of communicating widely to the world that Down’s syndrome is not a lifetime incapacitation.

There are issues that we still need to tak tent of. The English website on Down’s syndrome suggests that 18 health conditions need to be monitored carefully throughout the life of a person with Down’s syndrome.

Dr Milne has stolen my thunder about Aberdeen, so I will talk about Inverness instead. “Six Percent” is a combined book and photographic exhibition that Down’s Syndrome Scotland has developed in partnership with photographer Graham Miller. It is running in Inverness for most of this month. The exhibition has quotes from families and illustrates the full and rich life that people with Down’s syndrome can live.

I very much hope that we will all be able to go away from this debate with a better understanding of the potential of people with Down’s syndrome and a preparedness to help those who are affected by it.

17:30

I, too, thank John Wilson for bringing this debate to the chamber during Down’s syndrome awareness week. The debate helps to bring attention to not only the awareness week but the issue itself.

I am pleased that Down’s Syndrome Scotland has recently celebrated 30 years of providing many essential services, support and information to people with Down’s syndrome. As Mark McDonald and Malcolm Chisholm have pointed out, it is not the best-resourced organisation in Scotland and yet it provides an excellent service to the people who need it.

As every member has mentioned, many people with Down’s syndrome can face immediate stigma as assumptions—wrong assumptions, in many cases—are made about their abilities. That is why we need to promote a positive image of people with Down’s syndrome to the general public to help to get rid of that stigma and to create a more understanding environment so that people with Down’s syndrome can reach their full potential.

Down’s syndrome awareness week gives us the opportunity to raise awareness of Down’s syndrome and to challenge myths surrounding the condition. It also gives us a chance to highlight the concerns of people with Down’s syndrome and to ensure that those concerns are not forgotten.

I take the opportunity also to congratulate Down’s Syndrome Scotland on its success with the communication skills project, which has been mentioned. The project provides support to 84 families throughout Scotland, helping children with Down’s syndrome to develop their communication skills and providing parents with the tools to support them.

The Scottish Government is committed to improving the lives of people with learning disabilities and their families and carers in Scotland. People with Down’s syndrome make up 20 per cent of the learning disability population. I am therefore pleased that Down’s Syndrome Scotland is an active member of the implementation group for “The keys to life”, which is working to drive forward the recommendations of the strategy.

I am heartened by the genuine commitment of the group’s members to improve the quality of life for people with learning disabilities by building on the foundations that we already have in place in Scotland—through “The same as you? A review of services for people with learning disabilities”—and to deliver services that will further improve lives through the implementation of “The keys to life” project.

Thirteen years on from “The same as you?”, the principles that underpinned that policy of valuing people with learning disabilities are as relevant as ever. People with learning disabilities should have the opportunity to contribute to the communities in which they live, work and socialise.

People with learning disabilities tell us that, since “The same as you?” initiative was introduced, they have generally been more accepted and valued in their communities than ever before and they are now rightly seen as people who can contribute to Scottish society in numerous positive ways. I believe that those are the rights and freedoms that everyone should have and that the statutory agencies should be transparent in demonstrating how they respect and uphold human rights in all of their policies and practices. What people with Down’s syndrome and learning disabilities need is information so that they know what their human rights are and how to exercise those rights.

Health is an important issue for people with Down’s syndrome and learning disabilities, which is why much of the emphasis of “The keys to life” is on health. We need to know about the needs of people with learning disabilities. For example, we know that people with Down’s syndrome experience higher prevalence and earlier onset—around 30 to 40 years younger—of dementia than the general population. That is why I am pleased that the national dementia strategy helps to diagnose those at risk.

The Scottish learning disabilities observatory has been commissioned to lead work in partnership with NHS boards to improve data on people with learning disabilities. Not only has it committed to identify numbers of people with learning disabilities who have health needs; it is committed to helping us to improve health outcomes and address the unnecessary premature deaths of people with learning disabilities.

Having meaningful relationships is a priority for people with learning disabilities. Having the chance to make and sustain friendships and relationships is something that improves their wellbeing and quality of life. The evaluation of “The same as you?” tells us that only one third of those interviewed were able to name at least one close friend. That tells us that there is a need for people with learning disabilities to be given more opportunities to make and keep friends.

We are currently working in partnership with Equal Futures and other organisations. The “I’ll be there” friendship event took place on 30 January 2014, with around 180 people in attendance. Further events will take place across Scotland during the rest of this year.

We are committed to helping people with learning disabilities who want to work. We know that only 25 per cent of people who have learning disabilities are in employment or training for employment. That is why we have funded the Scottish Consortium for Learning Disability, including for people who have Down’s syndrome, to lead on an initiative called project search, which offers a programme of work experience to students who have learning disabilities to improve their chances of employment.

We know that living an independent life is important to people who have Down’s syndrome and other learning disabilities. This means having the same choice and control in their lives as other people and having the right help and support to be an active part of their community. Other policies, which are not solely directed at people who have learning disabilities, are also relevant, such as the opportunities for self-directed support, the legislation for which comes into effect next month. That legislation will give people who have Down’s syndrome and learning disabilities more choice and control over their day-to-day lives.

I have only touched the surface of what can be achieved in the next 10 years. We all have to commit to the agenda of improving the lives of people who have learning disabilities and their families and carers in Scotland. We need to continue to reduce barriers and discrimination. We need to commit to ensuring that the aspirations of people who have Down’s syndrome and other learning disabilities become real.

Down’s syndrome awareness week will help us to realise how we can live in a Scotland that values people who have Down’s syndrome and provides them with the opportunities to live in an equal society in which they are truly valued and properly respected. We look forward to continuing to work with Down’s Syndrome Scotland and other learning disability organisations to drive this agenda forward. It is a critical ingredient in making Scotland a better place in tomorrow’s world.

Meeting closed at 17:37.