Meeting of the Parliament 22 March 2018
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