Meeting of the Parliament 18 March 2014
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