Meeting of the Parliament (Hybrid) 19 April 2022
I thank Jeremy Balfour for bringing his motion to the chamber. I must also give a wee shout out to an inspirational family member with Down’s syndrome—I will call him Mr T—who can wow you with his music knowledge and make you smile every day of the week.
Like my colleague in Westminster, Douglas Chapman, I want to offer supportive comments on the Down Syndrome Bill for England and Wales. The bill sets out to destigmatise Down’s syndrome, improve services and deal with issues such as long-term care. It will require the UK Government to publish guidance on the specific needs of people with Down’s syndrome and how those needs should be met. With legal protections in place, it is hoped that the bill will make it easier for people with Down’s syndrome and their families to secure the services that they need and to challenge authorities that are not acting on their duties.
However, although I support the intentions behind the Down Syndrome Bill, I believe that the approach laid out by the Scottish Government has clear advantages as it looks to secure and sustain the transformative change that is overdue for people with Down’s syndrome who live in Scotland. The Scottish Government is committed to introducing a learning disability, autism and neurodiversity bill as part of the programme for government. In addition, a welcome learning disability commissioner role will be created. The bill and the associated commissioner will ensure that the rights of people with Down’s syndrome, among others, are respected and protected.
The inclusive rights-based approach in Scotland—a pan learning disability, autism and neurodiversity approach—is attracting a lot of attention from other parts of the United Kingdom. That is because it avoids the situation in which one group is singled out and prioritised over another in the delivery of public services. Instead, our approach recognises people’s distinctive needs while protecting the rights of all those with learning disabilities.
Organisations such as Down’s Syndrome Scotland have told me that they are encouraged by the timetable for developing and introducing the learning disability bill in Scotland, and they are equally impressed by the Scottish Government’s determination to ensure that people with lived experience are fully and meaningfully engaged in the consultation on the bill’s scope, ambition and policy position. Their voices are so important. The Scottish Government’s programme provides the community—and that is parents, carers and adults with Down’s syndrome—with the time and the space to meaningfully express their views in ways that are inclusive, accessible, respectful and rights based.
When I spoke on the international day of persons with disabilities, I focused my speech on the importance of the words “nothing about us without us”. One of the criticisms of Dr Liam Fox’s bill is how few people with lived experience were included in its development. I applaud the Scottish Government for taking an alternative approach, one that champions the voices of the community. Given the Scottish Government’s more inclusive approach that embraces the rights of people with all learning disabilities, it will be crucially important to recognise and explicitly identify people with Down’s syndrome within the definition of learning disability as set out in the learning disability bill in Scotland.
Those new pillars and provisions build on work that is already under way in Scotland to bring about lasting change for people with Down’s syndrome and their families and carers. Eddie McConnell, the chief executive of Down’s Syndrome Scotland, believes that we are opening a new chapter with the learning disability bill in Scotland and I wholeheartedly agree with that. I hope that the Down Syndrome Bill also heralds a new chapter in the UK Government’s approach and thinking that is far more centred on lived experience. As I said earlier, nothing about us without us.
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