Hansard

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 Misconceptions include outdated ideas that people with Down’s syndrome are always happy, that children with Down’s syndrome cannot attend mainstream school, that people with Down’s syndrome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.